Caring about P in the Court of Protection: the Re X scenario

by Jaime Lindsey, PhD Candidate and Teaching Associate at the University of Birmingham ( j.t.lindsey@bham.ac.uk)

In the recent Court of Appeal case, Re X [1], the judges’ obiter comments were certainly timely. The case concerned Deprivation of Liberty Safeguards (DOLS) cases under the Mental Capacity Act 2005 (MCA). The case itself turned on the question of whether P (the subject of the court proceedings) had to be a party to the proceedings in which they would potentially be deprived of their liberty. Whilst the Court of Appeal held that they did not have jurisdiction to hear the appeal, they made their feelings clear that P should always be a party to DOLS proceedings.[2]

Under the MCA, individuals can, in certain circumstances, be deprived of their liberty in a care home or hospital for the purpose of being given care or treatment.[3] Further, a person who may be deprived of their liberty outside of a hospital or care home, but still with sufficient degree of State involvement, would also require Court authorisation for the deprivation of liberty.[4] Many of us would expect that depriving a person of something so fundamental as their liberty should, at the very least, require them to have some input into the discussion. In fact, the ECtHR jurisprudence requires that a person who is to be deprived of their liberty should have access to a court and the opportunity to be heard.[5] This is not only important on an academic level; if a person who does not wish to be deprived of their liberty forcefully resists it, then the measures which need to be taken against them are surely an important factor for any court to consider before making an authorisation.

Yet this should not only be the case for removing somebody’s liberty. In my view, a more compassionate and inclusive approach should apply more broadly to the Court of Protection’s entire jurisdiction. In fact, new Court of Protection rules require the court to, at the very least, consider whether P should be required to participate in the proceedings and this is certainly a step in the right direction.

Involving P in the capacity question

As of 1st July 2015, the new Court of Protection (Amendment) Rules 2015 came into force. They require, amongst other things, that the Court considers whether it should make one of a number of directions relating to P’s participation in the proceedings (new Rule 3A Court of Protection Rules 2007). The possible directions it can make include: (1) joining P as a party (2) appointing a legal (or otherwise) representative for P (3) requiring P to address the judge (4) any alternative direction meeting the overriding objective. Whilst these rules certainly could have gone further, they show the Court’s increasing awareness of the greater need for P’s involvement.

Rule 3A is certainly an important step forward. It should ensure that judges and the parties are alive to the question of P’s involvement. Actually, involving P should be seen as a positive way to assist the Court in deciding whether he or she has capacity; a large part of the Court’s jurisdiction in health and welfare cases is about determining whether or not a person has the capacity to make a decision in the first place and this should not be forgotten. Clearly there will be cases where the capacity question is clear from the outset, for example consider the brain damaged adult on life support, but many more cases will be borderline and sometimes will involve adults who have no mental or learning disability at all.[6] Either way, to the extent that it is possible to do so and for capacity determinations at least, P should always be involved with proceedings.

A more inclusive approach?

The new rules should certainly go some way in achieving a more inclusive approach to decision making in the Court of Protection and are to be welcomed. However, the extent to which, and in what way, the options open to the Court will be used will need to be examined following implementation. A major factor in the increased involvement of P in proceedings will be the lawyers, social workers and carers who are involved in the case; if they see the benefit of involving P and argue in favour of this in court then is a judge really likely to refuse? Particularly in light of the obiter comments of the Court of Appeal in Re X, albeit that was in a slightly different context. In fact, the onus is not only on the judge in the case to consider this but it is also on the parties who can make an application to request such a direction. Those who know and work with P, and the lawyers on all sides, should be encouraged and feel empowered by recent developments to request P’s involvement.

The power of the Court of Protection in affecting the lives of individuals who fall under the MCA regime, both for the positive and negative, is enormous. In some ways, whether or not the outcome of the cases is any different as a result of the involvement of P is not the measure of success; what is vital is that people feel that their voice is heard, particularly in relation to decisions affecting their own lives. This empowers people to “buy in” to the ultimate decision that might be made on their behalf. That said, involving P in the decision making process will hopefully lead to better and more context sensitive decisions being made and the new rule 3A is a first step in achieving this.

[1] Re X [2015] EWCA Civ 599

[2]Ibid per Black LJ at para 108

[3] Pt1 s.1(2) MCA

[4]Under s.16(2)(a) MCA

[5]Winterwerp v The Netherlands [1979] 2 EHRR 387

[6] See for example IM v LM and AB [2014] EWCA Civ 37

Care Paid and Unpaid: Social, Economic and Human Rights Concerns

by Dr Joan Garvanwww.maternalhealthandwellbeing.com

Attempts to achieve gender equity have reached a new high water mark and the recognition and redistribution of care, both paid and unpaid, stands at the centre of this arena. The Australian secretariat – Economic Security 4 Women – have produced landmark reports, both scoping and quantifying the value of the ‘care economy’ and, more recently, Professor Marilyn Waring addressed the topic of care and dignity in the annual Pamela Denoon Lecture Series. Here below are key points from these papers and central messages made by Waring.

Two significant Australian reports on the care economy have been produced over recent years: Scoping the Australian Care Economy A Gender Perspective (2010) and Counting on Care Work in Australia (2012). These projects are concerned with the lifelong economic well-being of women. Though they are particular to Australia and reference local government policies, programs and strategies, they draw from an international body of research and deal with common concerns.

The first report references the importance of data collection and brings attention to landmark work in the Massachusetts case study that used United States Census and Time Use data to measure both paid and unpaid care work [1]. The author Valerie Adams notes tensions between unpaid work, voluntary work and paid work. She draws attention to the ‘relational’ nature of care work, and references the concept of ‘provisioning’ for human need. The report used the notion of ‘care work’ to depict both the paid and unpaid sectors. Adams considers definitions and current issues in the Australian care economy. She surveys relevant government policy and makes numerous recommendations for further research and data collection.

Counting on Care Work in Australia (2012) further develops this arena by quantifying the value of the paid and unpaid care sectors to the Australian economy. In 2009-10 twenty per cent of all paid employment in Australia was in the care sector. Care workers receive 96 cents for every dollar earned by the average Australian worker, and female workers earn on average 84 cents in the dollar to male care workers. The report valued the unpaid care sector at $650 billion with sixty per cent of this contribution being made by women aged 25 to 64. The report furthermore outlined and quantified government investment in the care sector. The authors make recommendations for further work in light of: demographic change; inter-generational concerns; and the continuing economic and life course implications for women.

Marilyn Waring prefaced her recent lecture Care and Dignity: Major challenges to economics and human rights (transcript and video available online: http://pameladenoonlecture.net/) with the proposition that over millennia care has been the primary responsibility of women. She has changed her emphasis since the publication of Counting for Nothing: What men value and what women are worth (1988) [2] and now frames these concerns within a Human Rights perspective.

Waring raised problems for the use of ‘care’ as an analytical category, arguing that most often carers are responsible for a myriad of associated tasks that could be lost through a continuing association with unpaid work. Nevertheless, drawing from studies from British Colombia, New Zealand, Papua New Guinea and the United Kingdom, she sets out a strident case whereby the human rights of care givers are being flouted. She and others set up a questionnaire for a Commonwealth report drawing from Amartya Sen’s capability approach to human rights which references choice, rest, health, meals, work and political involvement, and found multiple breeches.

With governments around the world withdrawing from social and welfare programs these kind of arguments are critical if we aren’t going to ‘throw the baby out with the bathwater’. Care, both paid and unpaid, are clearly significant to the health and well-being of the community, but further to this gender equality will remain allusive if we don’t see transformational change. Unfortunately the issues are complex and though there is increasing reference to the work of unpaid care in terms of achieving gender equity, there is a need to bolster and popularize the debates.

References

[1] Albelda, R., Duffy, M., Folbre, N. (2009), Counting on Care Work: Human Infrastructure in Massachusetts, University of Massachusetts, MA, Massachusetts

[2] In a recent anthology, Counting on Marilyn Waring: New Advances in Feminist Economics, edited by Margunn Bjornholt and Ailsa McKay, 31 authors from nine countries outline the wide ranging impact and resonance of Professor Waring’s work as well as the current frontiers of feminist economics.

 

 

Happy New Year – Welcome to 2015 and introduction to Ceri Durham our new administrator

It is perhaps too late to wish you all a HAPPY NEW YEAR given that we are now almost at the end of January, but as the beginning of 2015 is marking a new involvement for me as the administrator for the Revaluing Care Network, I feel it is appropriate to wish everyone a healthy and peaceful 2015 full of lively debate and interesting conversations. I look forward to being in touch with many of you as the year progresses. Particular thanks go to Sue Westwood from whom I am taking over the role, and who I already know will be of assistance in helping me build on her excellent work to date.

I was lucky enough to meet some of you at the ‘Cycles of Care‘ seminar at the end of November, but for those of you who I didn’t, I will tell you a little about me. I am Ceri Durham, a mother of three young children, living in Bow in London’s East End. I am currently undertaking my LLM (Masters in Law) in Medical Law at Queen Mary, University of London. Until October, I was working as a solicitor predominantly doing commercial and private client work for so-called “ultra-high-net worth individuals”. However, in October I took the plunge and left my (paid) work to follow the passion of my voluntary work role as a campaigner for improvements in maternity services (and to do my LLM, of course).

As a maternity rights campaigner, my role splits into two – the complaining activist and the compassionate supporter. I spend much of my time telling anyone who will listen about the perilous issue of women’s choice and birth autonomy in the UK today. I also have the joy of running various birth-groups supporting women as they make their choices and plans for their birth, in particular assisting women who are contemplating giving birth at home and who are finding it difficult to access the information and advice they need to make the decision that is right for them. In my view, even where autonomy and human rights are protected in theory, the women I support tell a different story. Thankfully, even where there have been difficulties, surgery or undesired outcomes, the wonderful birth stories I hear full of joy and laughter from women who have had empowering and life-affirming births, make me know that this is a campaign worth fighting for.

Whilst I believe – and am very grateful – that maternity services in this country are ‘safe’ and will usually result in a mother and baby who are both alive at the end of birth, I feel the emphasis that this is ‘all that matters’ manifests by denying women real choice about their body and the care of their children. Too often there seems to be a tension between consultant (clinical) care and genuine woman-centred midwifery care, and whilst some advances have been made in this area, the fact that an event as natural and as every-day as birth should result in thousands of women each year suffering from avoidable post-traumatic stress disorder, anxiety, depression and social exclusion is something which I feel the need to keep speaking about. That this is all taking place in the midst of NHS cuts and increasing privatisation of the NHS adds further issues to the mix, especially because we know that the models of maternity care which most benefit women, especially those who may be described as ‘vulnerable’, bear little relation to what is offered in practice. Needless to say, if you know anyone who is pregnant or if you would like further information on the campaigns I am involved in, please get in touch. I would love to hear from you.

Ceri.

‘Preceptorship’ – helping newly qualified nurses ‘thrown in at the deep end’

Preceptorship is support for newly qualified nurses (NQNs) as they transition from studenthood to the demands, and responsibilities, of being a qualified nurse. Preceptorship refers to ‘a period of structured transition for the newly registered practitioner during which he or she will be supported by a preceptor, to develop their confidence as an autonomous professional, refine skills, values and behaviours and to continue on their journey of life-long learning’ (DoH 2010: 11). It is underpinned by a range of government policies and good practice guidelines, including A High Quality Workforce: NHS Next Stage Review which states: ‘A foundation period of preceptorship for practitioners at the start of their careers will help them begin the journey from novice to expert’ (DoH 2008: 72). Preceptorship aims to address how knowledge acquired in nurse training is recontextualised in practice (Evans et al 2010) and how newly qualified nurses (NQNs) adapt to the ‘real world of practice’ (Houghton 2014).

In addition to needing support in developing their clinical skills and self-confidence in their own nursing judgements, many NQNs find time-management in busy clinical contexts a challenge (O’Kane 2012) and, in parallel, experience difficulties in relation to delegation skills. Inability to delegate can lead to NQNs feeling overwhelmed, which can result in burnout and high staff turnover of NQNs. However, despite the need for registered nurses to be competent in delegating and supervising unregistered health care assistants, research suggests that their nurse education does not always equip them with the necessary skills (Hasson, McKenna and Keeny 2013). Preceptorship then becomes a vital means of supporting them in acquiring those skills.

Even though research repeatedly affirms the importance of preceptorship, it is not consistently available to NQNs cross the UK, nor, even if offered on paper, is it always reliably delivered in practice (Higgins Spencer and Kane, 2010) particularly at times where there are considerable restraints upon nursing budgets (Avis, Mallik and Fraser 2013). This means that many NQNs feel they find themselves in ‘Sink or Swim’ situations (Hughes and Fraser 2001). While many will swim, some inevitably will sink. This is a terribly waste not only of training, but also of people who want to be, and could be, competent and confident nurses, provided they are given sufficient support during their transition from student to qualified nurse. Investment in preceptorship can have huge benefits in supporting and retaining NQNs (Whitehead et al 2013) and as such should be made consistently and robustly available to nurses during their initial post-qualifying period.

References
Avis, Mark, Mallik, Maggie and Fraser, Diane M. (2013). ‘”Practising under your own Pin”–a description of the transition experiences of newly qualified midwives.’ Journal of Nursing Management 21(8): 1061-1071
Department of Health (2008). A High Quality Workforce: NHS Next Stage Review. London: Department of Health.
Department of Health (2010) Preceptorship Framework for Newly Registered Nurses, Midwives and Allied Health Professionals. London: Department of Health
Evans, Karen, et al. (2010) ‘Putting knowledge to work: A new approach.’ Nurse Education Today 30(3): 245-251.
Hasson, Felicity, Hugh P. McKenna, and Sinead Keeney (2013) ‘Delegating and supervising unregistered professionals: the student nurse experience.’ Nurse Education Today 33(3): 229-235.
Higgins, Georgina Spencer, Racheel Louise and Kane, Ros (2010). “A systematic review of the experiences and perceptions of the newly qualified nurse in the United Kingdom.” Nurse Education Today 30(6): 499-508.
Houghton, Catherine E. (2014) ‘”Newcomer adaptation”: a lens through which to understand how nursing students fit in with the real world of practice.’ Journal of Clinical Nursing: Advance access, http://onlinelibrary.wiley.com/doi/10.1111/jocn.12451/full
Hughes, Anita J., and Fraser, Diane M. (2011). ‘”SINK or SWIM”: The experience of newly qualified midwives in England.’ Midwifery 27(3): 382-386.
O’Kane, Catherine E. (2012). ‘Newly qualified nurses’ experiences in the intensive care unit.’ Nursing in Critical Care, 17(1): 44-51.
Whitehead, Bill, et al. (2013). ‘Supporting newly qualified nurses in the UK: A systematic literature review.’ Nurse Education Today 33: 370–377.

Why Isabel Menzies Lyth is More Important than Ever

As covered in my previous blog for Revaluing care OXPIP provide parent-infant therapy to people with babies from conception to age two. So why am I writing a blog which features someone who is famous for trying to understand the internal dynamics of hospitals and nursing? Isabel Menzies Lyth helped found the Tavistock Clinic but was most famous for her paper, ’Social Systems as a Defence Against Anxiety”. The paper studied trainee nurses and gave rise to concerns about how many nurses were failing to complete their training. She came to the belief that organisations working with trauma and illness developed defences to prevent front-line staff becoming overwhelmed by the distress and suffering they were experiencing on a day-to-day basis. I want to explain why I believe her thinking is still highly relevant to the provision of care and our work in Children’s Centres.

I will start with a bit more context about OXPIP and how we work.  We are one of the pioneers of parent-infant psychotherapy. We have been working in Oxfordshire for the last fifteen years looking at how to support the development of more positive early relationships between parents and their babies. Founded by Sue Gerhardt and others, and building on emerging knowledge about early brain development we now work with 300 families a year and consistently see improvements in maternal mental health and the quality of the parent-infant relationship.

What distinguishes the work of our therapists, aside from their considerable expertise and knowledge, is their focus on the relationship as the subject of therapy. Improving the relationship between a mother and her baby has benefits for both sides on every front from mental and physical health and wellbeing through to reduced criminality and better academic attainment later in life.

So, aside from being heavily influenced by Bowlby’s theories of attachment, how is Isabel’s work to better understand ‘institutional anxiety’ relevant to our work with parents and infants? The answer is that while our therapeutic work with parents and their babies is at the heart of what we do, there is a great deal around that which is also of value. We know from countless enquiries following tragic deaths that communication between professionals is critical to identify and respond to abuse and neglect. We also know, although it gets less prominence, that there is a natural human tendency not to think about horrific or unthinkable acts which are close to us, to not see that which should be apparent or not to act when rationally it is clear we should.

It is only through giving front line staff the time and space to think through the issues they are faced with that we can reasonably expect them to respond sensitively and appropriately. It is only by developing people’s understanding of human relationships and how to respond supportively to distress or dysfunction that we can hope to reduce the number of such tragedies.

Children’s Centres vary hugely and they include some highly skilled and experienced staff, but the jobs are often poorly paid and under-supported. We offer both formal supervision and informal consultation to staff in children’s centres which helps them to contain and understand the challenging emotions and behaviours they can be presented with on a daily basis.

For two years after leaving university I worked in front line care roles: an older people’s care home and a geriatric hospital. I have seen, and fought to resist, the institutional apathy and indifference which can so easily come to inhabit such places. Poorly paid staff, too many demands on their time, and little support from management will inevitably lead to people becoming numb and ignoring of the people in their care. I fought to resist it but for me it was a short-term job. Had I had to fulfil such a role for a living, for life, I would have struggled to retain my humanity and compassion for the people in my care.

It is this emotional exhaustion that leads to detachment and organisational anxiety. It is the need to acknowledge and address anxiety, despair and depersonalisation that makes the work of Isabel Menzies Lyth important. How do we ensure the health of the organisations that provide the care in our society? How do we care for the carers? How do we prevent organisations from sinking into malaise?

OXPIP: The Oxford Parent Infant Project
Suite J
High Street
The Kidlington Centre
Kidlington
OX5 2DL
T: 01865 371080 or 01865 778034
info@oxpip.org.uk
www.oxpip.org.uk

N.B. This blog is adapted from the introduction I gave for Jeremy Holmes when he gave the inaugural Isabel Menzies Lyth Lecture ‘Malaise in the NHS’ for OXPIP on 22 October 2013. For more information do drop me a line.

The Liverpool Care Pathway Controversy: Time to Revisit the Ethics of Care?

Back in July an Independent Review headed by Baroness Julia Neuberger published a report into the controversy over the use of the Liverpool Care Pathway (LCP) – a holistic plan for care of dying patients, within the acute hospital sector (Neuberger 2013) This came in the wake of a long line of recent enquiries into the standards and practices of care within the healthcare sector (Francis 2013, Patients First 2013, Keogh 2013) and in response to media headlines such as “Distraught families allege that the NHS protocol designed to allow the terminally ill ‘a good death’ is being abused” (The Telegraph 29 October 2012).

The LCP had originally been developed by the Royal Liverpool University Hospital and the Marie Curie Hospice Liverpool in the late 1990s, for the care of terminally ill cancer patients. It comprises of 10 key elements, including a recognition that the patient is dying; communication with the patient and relatives; spiritual care; reviews of medication, nutrition and hydration; and collaboration and shared decision-making. All of which are intended to be guidelines that aim to support, but not replace, clinical judgment (Ellershaw 2013, 2).

The controversy centres around the conflict between the recognition of the LCP as a model of good practice, (NICE 2003, 2006) and the findings of the Review that in reality incidents of poor treatment – “uncaring, rushed, ignorant – abound” (Neuberger 2013, 3). The title of the Review, “More Care, Less Pathway” neatly sums up its flavor. It concludes that patients were often treated with less respect than they deserved, with the use of the LCP being reduced to a “tick box exercise” and that communication with the families was inadequate or entirely absent (Neuberger 2013, 3-4).

This tension between laudable intention and implementational failure generates questions about how policy and law can effectively promote practical and realistic care practices and yet remain sensitive to the myriad of vulnerabilities experienced in the face of death. This is all the more pertinent in relation to dying, where care’s traditional preservative purpose is subverted, so that care not only reaches beyond survival but entirely precludes it. Further, the aim of the LCP to “ensure that uniformly good care is given to everyone, wherever they are (…)” (Neuberger 2013, 12) brings into sharp focus the socio-spatial notion of caring (Johnsen et al 2005). This examines the potential of such ‘caring spaces’ as the hospital, to accommodate the apparent merger between the private and the public, the intimate and institutional in the care of the dying. This in turn raises the question not only of institutional support and time for care (Groenhout 2004) but also of whose role it is to care, which feeds into the wider debate surrounding the education and training of doctors and nurses.

It seems evident that the absence of both the virtues (Engster 2005, 55) and practices proclaimed by the advocates of the Ethics of Care, such as a recognition of the relational self (Gilligan 1982), the need for particularist solutions (Bowden 1997) and a recognition of the ‘expertise’ that can arise as a result of practical engagement in caring practices (Ruddick 2009,) were instrumental in the failure in implementation of the LCP. Problems such as poor communication, with “brutal and callous” language being used by clinicians when speaking to relatives about the patient (Neuberger 2013, 25), may be remedied with training. Yet a recognition of the patient’s ‘relational autonomy’ (Nedlesky 2011) in order to foster practices of shared decision-making, or the over-coming of the apparent taboo that even healthcare professionals feel in speaking about death, (Neuberger 2013, 21) may require a more significant change of culture.

One wonders how other, more subtle aspects of the Ethics of Care as it relates to the process of dying, might be feasibly accommodated within institutional practice. How could notions of the embodied experience of the dying patient, which would provide an anchor to the notion of particularity in care, (Fox and Murphy 2013, 13) be recognized? The current link between the LCP and embodiment is a paradoxical one, with the physical body at once occupying the place as its central object, yet silenced by the routine and often unexplained use of heavy sedation and the withdrawal of nutrition and hydration, causing great distress to the relatives (Neuberger 2013, 24). Likewise the accommodation of aspects of spiritual care, such as the importance of religious and cultural aspects of dying, or the desire to place remaining lucid above pain relief in order to cherish time with their relatives (Neuberger 2013, 24). Could a caring response that may even require a retreat from the desire to minimize suffering, ever be countenanced? A recent example is found in the case of VT, a 72 year old devout muslim man whose family argued that their father, for whom they had cared devotedly for 10 years, would want his life preserving for as long as possible, even if he was suffering, as he would view that suffering as an opportunity for purification in preparation for the next life (The Guardian 13 November 2013).

Ultimately, the final recommendation by the Review that the LCP be phased out by July 2014 and be replaced by personalised care plans for each patient, backed up by condition-specific guidance (Neuberger 2013, 48) is surely right. The potential for us and our loved ones to die in accordance with our own view of a ‘good death’ is an appealing one. Yet the Review is also right that a system wide-change is needed to improve end-of-life care, and still one wonders how institutional mechanisms operating under such a nuanced and sensitive approach will be either practical or feasible?

Kirsty Moreton – Birmingham Law School, University of Birmingham.   KLM180@bham.ac.uk

 As a result of the Review, the Leadership Alliance for the Care of Dying People (LACDP) has been set up to respond to the Review’s recommendations and publish a system-wide response, primarily focusing at this stage on clinical practice. Its Engagement Document is still open for consultation until 6 January 2014 https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage.

References:

-           Bowden, Peta. 1997. Caring: Gender Sensitive Ethics. Routledge.

-           Ellershaw, John. 2013. Statement regarding LCP Review Publications. Marie Curie Palliative Care Institute, Liverpool. www.mcpcil.org.u

-           Engster, Daniel. 2005. ‘Rethinking Care Theory: The Practice of Caring and the Obligation to Care’ 20(3) Hypatia 50.

-           Fox, Marie and Murphy, Therese. 2013 ‘The Body, Bodies, Embodiment: Feminist Legal Engagement with Health’, in Davies, Margaret and Munro, Vanessa. (eds) The Ashgate Research Companion to Feminist Legal Theory. Ashgate 249.

-          Gilligan, Carol. 1982 (2nd edn 1993) In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.

-          Groenhout, Ruth. 2004. Connected Lives: Human Nature and an Ethic of Care. Rowman and Littlefield.

-          Johnsen, Sarah: Cloke, Paul; May, Jon 2005 ‘Day Centres for Homeless People: Spaces of Care or Fear?’.

-          Nedelsky, Jennifer. 2011. Law’s Relations: a Relational Theory of Self, Autonomy and Law. OUP

-          Neuberger, Julia. 2013. More Care, Less Pathway: A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway.

 -          Ruddick, Sara. 2009. ‘On Maternal Thinking’ 37 (3&4) Women’s Studies Quarterly 306.

 

Revaluing Care Workshop 2: September 2013, University of Adelaide, Australia.

At the beginning of September 2013 our Revaluing Care network had its second workshop, following an earlier workshop at Keele University, UK, in September 2012. This second meeting over two days at the University of Adelaide, in South Australia was marked by its attention to analytical concerns that had been raised in the 2012 session. It was also marked by much convivial discussion over food and wine at the end of each day.

We met in a room with views of the city all around us and, fortunately, the sun shone almost all of the time. What I recall most clearly was the very high standard of the papers, the sense of an extraordinary level of conversation within a group which has now forged a strong identity. The degree of confluence of ideas, of substantive and strongly supportive debate was striking. It is rare to attend such an event and feel constantly engaged by an extremely stimulating exchange of views. The event was both inclusive and demanding in the very best sense.

The workshop looked at a wide variety of existing services around care and their impacts on social interconnection (such as services around HIV/AIDs, young people and dementia care), as well as a range of existing legal and policy frameworks. This international orientation informed extensive discussion around new ways of conceiving care (for instance, in relation to social activism, migration and cross-national mobilities). However, it also enabled us to consider where the term care begins to fall away, or seems insufficiently recognised or activated. Consequently there was a significant interchange over the two days concerning the analytical and practical boundaries of care (for example, in relation to sexualities, diverse families, the notion of the human, marginalised services and public institutions seemingly distant from care including parliaments and courts).

These deliberations led to a range of theoretical and terminological discussions around the continuing usefulness of the notion of care, around what it covers and its limits.

The success of the workshop was not only evident in the strengthening of the network as an active, participatory and supportive research community, but also obvious in the final discussions around building research teams, projects and publications across the world and across disciplinary constraints. We aim as a result to produce articles, books of collected works, and grant applications. Many of these aims are now in process. The group was also firmly of the view that further workshops would be very worthwhile and assist in the development of these aims. So, watch this space.

In sum, I can only say that I, for one, gained immensely from the workshop and now have an even stronger sense of the considerable research capabilities of the group. This is a group with much to gain from our continuing association! It is one of the few research clusters that I have been involved in which shows ongoing promise of generating important intellectual exchanges and innovative new work .

Professor Chris Beasley

Discipline of Politics & International Studies (POLIS)
School of Politics and History
 
Co-Director, The Fay Gale Centre for Research on Gender

Older People’s Day – Including Older LGBT people

It’s Older People’s Day in the UK on 1st October, and it seems timely to flag the particular issues affecting older LGBT people, who are an under-recognised and under-served group of individuals. Yet their numbers are growing. It is estimated that between 5-7½% of the population have a ‘non-heterosexual’ identity. This means there are between 61,000 and 122,000 ‘non-heterosexual people’ over 60 living in the UK today, and this figure is set to rise to between 881,000 and 1,763,000 by 2030. Older LGBT share many of the issues and concerns of all older people, but their ageing can be made more complicated by their sexualities, gender identities and histories (1).

According to a recent UK survey comparing over 1,000 older LGB people and 1,000 older heterosexual people (2), older LGB people are more likely to be single and to live alone, less likely to have children and are less likely to see biological family members on a regular basis.  Older LGB people are also more likely to suffer from the consequences of a lifetime of minority stress (stigma and marginalisation) and as a result are more likely to drink alcohol, take drugs and smoke than older heterosexual people. They are more likely to have a history of mental health problems, and to have current concerns about their mental health, particularly depression. This can be linked to bereavement following the deaths of partners and/or close friends, which often goes unrecognised (3).  Many trans people are also estranged from their families, and continue to be regarded as mentally ill under the psychiatric diagnosis of ‘gender dysphoria’ making them particularly wary of engaging with mental health services (4).

With less intergenerational support than their heterosexual peers, older LGBT are more likely to need formal social care, and at an earlier age, than older heterosexual people. Yet at the same time, the majority of older LGBT people are very worried that health and social care providers will not be able to recognise or meet their needs.  Many feel they would have to hide their identities from care staff and/or fellow service users (the older people are, the more they carried the prejudices of the past, (5)). Many are worried that they will be unwillingly exposed by their own or a loved one’s dementia (6). Many are fearful that they will spend the final years lonely and isolated, estranged from loved ones, in care homes where their lives and identities are either not recognised or not valued and validated (7).

We need to ensure that all older people are recognised and respected for who they are, and that includes older LGBT people. We also need to know much more about the lives, needs and wishes of older LGBT people, and this is where the ‘Minding the Knowledge Gaps’ project comes in. This project is funded by the Economic and Social Research Council (ESRC) and is co-organized by Andrew King (PI), University of Surrey, Kathryn Almack (University of Nottingham), Yiu-Tung Suen (University of Oxford/Chinese University of Hong Kong) and Sue Westwood (Keele University). The project involves a series of six themed seminars followed by a final conference, aimed at exploring gaps in knowledge and research about LGBT ageing, and identifying ways to address those gaps. For more information, go to the ‘Minding the Knowledge Gaps’ project. A further project of interest is ‘The Last Outing’ . Based at the Sue Ryder Centre, Nottingham University, the study is exploring end of life care experiences and concerns of older LGBT people.

Both projects can be followed on Twitter: @LGBTageing and @TheLastOuting.

References

(1)  Ward, R., et al (eds) (2013) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London and Philadelphia: Jessica Kingsley.

(2)  Stonewall (2011) Lesbian, Gay Bisexual People in Later Life, London: Stonewall

(3)  Almack, K., et al. (2010) ‘Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual elders.’ Sociology. 44(5): 908-924.

(4) Fredriksen-Goldsen, K., et al. (2013) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.’ The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013

(5)  Valentine, G. & Macdonald, I. (2004) Understanding Prejudice London: Stonewall

(6)  Price, E. (2012) ‘Gay and lesbian carers: ageing in the shadow of dementia’, Ageing & Society, 32: 516-532.

(7)  Ward, R., et al (2011) Don’t look back? Improving health and social care service delivery for older LGB users, London: Equality and Human Rights Commission.

‘Gender Identity and Health Care Experiences in Australia’ by Dr Damien Riggs

In 2012 and 2013 Dr Clemence Due and I conducted two surveys, the first focusing on the health care experiences of Australian people who were female assigned at birth (FAAB) but who now identify with a different gender identity, and the second focusing on the healthcare experiences of Australian transgender women. Our analyses so far have adopted a comparative approach, primarily because most previous studies of transgender, transsexual or genderqueer people’s experiences of healthcare have not disaggregated findings by assigned sex. We thought that a comparative approach might thus be useful given that research suggests that transphobia is highly correlated with both homophobia and sexism amongst heterosexual, cisgender people (see Riggs, Webber & Fell 2009). These three forms of discrimination are related by the fact that the first two are about attitudes towards gender non-conformity, and the third measures how much an individual subscribes to social norms about (nominally cisgender) gender role conformity. Previous research suggests that transphobia (and cisgenderism more broadly) is gendered, not only in the sense that cisgender men are more likely to be transphobic than are cisgender women, but that people FAAB will experience transphobia or cisgenderism differently than will people male assigned at birth (MAAB). In undertaking a comparative approach, then, our hypothesis was that such differential discrimination would result in different experiences with healthcare providers between the two surveys.

In order to test if it was appropriate to group all responses from people MAAB together as one group, and to compare this with all responses from people FAAB, we first checked to see if there were any significant differences within each group in terms of current gender identity. In each study participants were asked to name their current gender identity. The three main categories used by participants within both of the studies were:

1. Affirmed gender (i.e., simply ‘male’ – used by people FAAB – or ‘female’ – used by people MAAB)
2. Transgender (this included terms such as trans woman, trans girl, trans boi, transgender man)
3. Genderqueer

Statistical testing indicated that both within the surveys, as well as when combining the two samples into a whole, there were no significant differences in between those people who identified themselves using either their affirmed gender, the term ‘transgender’, or the term ‘genderqueer’.

In order to further ensure that focusing on differences between people MAAB and people FAAB was a valid approach, we also looked at whether there were other notable differences across the two samples. We found that:

1. Participants who were older were more likely to have undertaken sex-affirming surgery than participants who were younger,
2. Participants who were older reported more positive levels of mental health than did participants who were younger, and
3. Participants who had undertaken sex-affirming surgery reported more positive levels of mental health than did participants who had not undertaken surgery (as we had already found when looking solely at the first study, see Riggs & Due, 2013).

These initial findings suggested to us that it was possible that the main issue at stake across the samples was age. What we did, then, was control for age in our subsequent statistical testing. This enabled us to examine whether assigned sex (MAAB or FAAB) was a significant predictor of experiences. The answer was yes:

• Participants who were MAAB were more satisfied overall with the support they received from counselors, psychologists and psychiatrists than were participants who were FAAB,
• Participants who were FAAB reported more positive levels of mental health than did participants who were MAAB,
• Participants who were MAAB reported more positive experiences of gender-affirming surgery than did participants who were FAAB,

In addition to differences between participants MAAB and participants FAAB, there were other interesting findings. Some of these highlight areas in need of improvement by (nominally, though not in all cases) cisgender mental and physical health care professionals:

• Participants who reported higher levels of discrimination from health care professionals reported less positive levels of mental health,
• Participants who reported feeling that they frequently had to educate health care professionals about issues related to their current gender identity reported higher levels of discrimination,
• Participants who reported feeling that they frequently had to educate health care professionals about issues related to their current gender identity reported that they felt less respected by the professionals.

So what do all of these findings suggest to us? We of course acknowledge that this was a modest sample (78 people FAAB and 100 people MAAB), though these numbers are similar to those of the pioneering TranZnation report (2007), and they include participants from all Australian states and territories. The findings suggest the importance of taking into account both age and natally assigned sex. These demographics may impact upon people’s experiences due to differing:

• Diagnosis rates of ‘gender dsyphoria’ between people MAAB (0.005% to 0.014% of the population) and people FAAB (0.002% to 0.003% of the population),
• Societal gender norms and expectations of people FAAB and people MAAB, such that experiences of discrimination from the general population, from transgender communities, and from health care professionals will likely differ according to cisgender (and transgender) people’s assumptions about gender norms,
• Degrees of availability and successful outcomes of surgery as perceived by people MAAB when compared to people FAAB (though this is slowly changing, see Cotten, 2012),
• Understandings of gender identity within non-gender normative communities.

The report documenting the full findings is available at: http://www.genderidentityaustralia.com/?p=262

References

Cotten, T.T. (Ed.). (2012). Hung jury: Testimonies of genital surgery by transsexual men. Transgress Press.
Couch, M., Pitts, M., Mulcare, H., Croy, S., Mitchell, A., & Patel, S. (2007). TranZnation: A report on the health and wellbeing of transgender people in Australia and New Zealand. Melbourne: Australian Research Centre in Sex Health and Society.
Riggs, D.W. & Due, C. (2013). Mapping the health experiences of Australians who were female assigned at birth but who now identify with a different gender identity. Lambda Nordica, 5.
Riggs, D.W., Webber, K., & Fell, G.R. (2012). Australian undergraduate psychology students’ attitudes towards trans people. Gay and Lesbian Issues and Psychology Review, 8, 52-62.

Dr Damien Riggs
Senior Lecturer
Flinders University
GPO Box 2100
Adelaide 5001
South Australia

 

 

Older lesbians in residential and nursing care

A central feature of care in the fourth age is the medicalisation of ageing bodies, the emphasis on collective bodily care and the power dynamics involved in that care1. An aspect of these dynamics that has not yet been explored is the intersection of age, gender and sexuality in the provision of personal care in residential settings for older people. Single, childless, older women are most likely to populate these settings2. These women are also more likely to be lesbians, both because older lesbians and gay men are earlier and disproportionate users of formal social care, and because older lesbians are more likely than older heterosexual women to be single and childless3. Lesbians have often found the processes of self-disclosure in health contexts a treacherous terrain to navigate in earlier life, many avoiding screening/treatment and/or choosing not to disclose their sexual identities to medical professionals, particularly during intimate physical examinations4. Some younger(er) lesbians also report feeling vulnerable to the heteronormative gaze in those gay commercial contexts frequented by heterosexual women5.

Residential care for older people – heteronormative at best, homophobic at worst6, is situated at the intersection between these two sites of vulnerability. It is also a site of social exclusion where ageing bodies are hidden away and where dependency can mean it is less likely someone will complain about their care or otherwise assert their rights, especially people from minority communities7.

Care spaces in the home or in sheltered accommodation or residential care have long been recognised as complicating the notion of the public-private divide, being both public work spaces and private home spaces. For an older lesbian this becomes even more complicated. Home care which goes public no longer affords the sanctuary of private identity performance and management. Yet at the same time, because it is home care, often in care spaces where the very old older person is hidden away from the public eye, some of the legal protections which she might have been able to mobilise for herself also do not apply, when the disciplinary norms of social relationships dominate. In this way an older lesbian can be disadvantaged in multiple ways by a home that has gone public and a public space that operates on private, heteronormative, lines.

(1)  Twigg, Julia. (2004) ‘The body, gender, and age: Feminist insights in social gerontology.’ Journal of Aging Studies 1891): 59-73.

(2)  Arber, Sara (2006) ‘Gender and Later Life: Change, Choice and Constraints’. In J. Vincent, C. Phillipson and M. Downs (eds) The Futures of Old Age, pp. 54-61, London: Sage.

(3)  Heaphy, Brian Yip, Andrew and Thompson, Debbie (2004) ‘Ageing In A Non-Heterosexual Context’, Ageing & Society, 24(6): 881-902; Stonewall (2011) Lesbian, Gay Bisexual People in Later Life, London: Stonewall.

(4)  Hunt, Ruth, and Julie Fish. “Prescription for Change: Lesbian and bisexual women’s health check 2008.” Stonewall and De Montford University (2008).

(5)  Casey, Mark (2004) ‘ De-dyking Queer Space(s): Heterosexual Female Visibility in Gay and Lesbian Spaces’, Sexualities, 7(4): 446-461

(6)  Ward, Richard, Pugh, Stephen and Price, Elizabeth (2011) Don’t look back? Improving health and social care service delivery for older LGB users, London: Equality and Human Rights Commission.

(7)  Aronson, Jane and Neysmith, Sheila M. (2001) ‘Manufacturing Social Exclusion in the Home Care Market’, Canadian Public Policy – Analyse De Politiques, 27(2): 154-165