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

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.

Peripheral Thinking and Abortion Care

By Ruth Fletcher

‘Peripheral thinking’ seems to me to be one useful framework for identifying what states do when they respond to residents’ practices of travelling away for care.   States take a variety of actions when their residents cross borders for care; actions which produce, stigmatise, ease, regulate and represent that flow all at the same time pulling it in different directions. If we want to understand better the effects of those actions and perhaps even how to steer them, we need a way to differentiate between them while acknowledging the transnational space they occupy. Here I want to distinguish between three different kinds of peripheral thinking that inform such state actions – inverted, tangential and circular – in order to consider further how best to respond to the spaces for engagement that they open up. My reflections work out from the example of state actions and transnational care flow with which I’m most familiar, that of Irish state practices as they contribute to women’s outward flow for abortion care (Fletcher, 2013).

Inverted peripheral thinking

When states adopt law and policy that support travel for care whose provision is restricted at home, one kind of peripheral thinking they use to justify their actions takes an inverted form. They claim that the failure to provide the particular care at issue is actually evidence of a central role in international care provision and not a peripheral role.   In arguing that Ireland is an international leader in care for the ‘unborn’ and in maternity care more generally, the state has often represented its failure to care for pregnant women as a success. This is a familiar if crude form of thinking, which Barrett (1992), drawing on Marx, called the ‘camera obscura’ version of ideology.   The periphery represents itself as central to the delivery of care (to the ‘unborn’), with the effect of negating a peripheral role and obscuring failures in care delivery (to pregnant women).

Tangential peripheral thinking

But inverted peripheral thinking is not the only rationality that states use when they play a role in generating outward flows for abortion care. They may turn authoritarian in restricting or punishing travel for abortion care (Fletcher, 1998), but that is relatively rare. It is more usual for states that are peripheral to the provision of abortion care to end up accommodating use of that care to some extent because their residents compel them to. In the 1990s the Irish state famously compromised on its anti-abortion position by constitutionally recognizing freedoms to travel to and receive information about abortion care abroad. Since then the Crisis Pregnancy Programme has developed a network of predominantly pro-choice counselling agencies throughout the Republic of Ireland which provide free pregnancy counselling and post abortion check ups.

In a two-tier health system where many people pay fees to attend a general practitioner, the provision of free pre- and post- abortion care, with all its limits, is significant. In using regulatory techniques such as public funding, training and communication to normalize travel for abortion care, the Irish state demonstrates tangential peripheral thinking. Here the peripheral thinker does not want to become core as care provider, but instead approaches the core provision of abortion care sideways.   Peripheral thinking develops tangential connections with the core provider of abortion care by taking on activities which are a key part of abortion care, but are themselves on the periphery of that care, namely the provision of information, counseling and check ups. Tangential peripheral thinking then is conscious of being at a distance from core care provision, and does not want to become core. Rather tangential thinking connects periphery and core care providers by taking peripheral care activities, which are needed for the provision of core care, as the object of its attention and facilitation.

So far, civil society critics of Irish abortion policy have focused on the discriminatory and hypocritical aspects of this kind of tangential thinking (e.g. ARC, CRR, DfC, ICCL, IFPA, WHRA). Travel policy has discriminatory effects and is not an adequate means of the state meeting its public responsibilities, because the less mobile will be less well served. Abortion travel policy is hypocritical because it cedes its domestic anti-abortion moral stance and supports access to abortion on grounds that would not be legal within the territory. But these critiques can retain their truth while we also recognize that travel policy has some positive effects from a feminist perspective.

We can welcome the way that this public recognition of women’s use of abortion care has likely contributed in some way to increased tolerance of abortion.   Opinion polls now regularly reveal greater levels of support for abortion than the state is willing to entertain in domestic provision. Although, as in many other countries (e.g. Sanger, 2014), Irish women are far from feeling free to speak openly at will about their abortion experiences, there have been several initiatives which tackle the association of abortion with stigma in the public sphere (Enright, 2014). The state’s tangential peripheral thinking has opened up (and indeed arguably resulted from) spaces for feminists and pro-choice advocates to engage and push the state further towards recognizing and serving women’s needs.

Circular peripheral thinking

A third kind of peripheral thinking that we see in Irish abortion travel policy takes a circular form and argues that there is nothing the state can do to change its own practices. Here the state argues that its own rules, or the views of the people, prevent it from acting to cure some harm or wrong that it cedes is in contravention of international human rights norms. There was a particularly spectacular example of this kind of peripheral thinking evident in the state’s response to the UNHRC during Ireland’s review under the ICCPR in July 2014. The Minister for Justice and her staff faced hard-hitting criticism by the HRC members for the failure to protect women’s civil and political rights in relation to abortion but also more generally (e.g. Cahill, 2014).

Representatives of the Department of Justice responded by relying on Article 25 and the right to vote to say that past abortion referendums meant it could not do any more legally to bring Irish abortion law into conformity with the Covenant. As Enright tweeted during the hearings (I’m paraphrasing), “to recap, the Department of Justice has just argued that Parliament can vote to inflict inhuman and degrading treatment on women”. Much was made at the time of this failure of the state to recognize that this ‘tyranny of the majority’ type argument contradicted the whole premises of the state’s claimed commitment to human rights, and indeed HRC member Mr Shany asked the state party to withdraw the relevant statement.

But here the point I want to make is that this way of thinking is a circular denial of sovereign power to make and interpret law. This state is so embedded in the periphery of abortion care that it can’t even imagine the possibility of proposing a referendum which would liberalise abortion provision, rather than restrict it (see further Flinterman’s comments). A state which refuses to act in legislating for abortion care (except when forced to by the ECtHR in ABC) on the grounds that its own legal rules so prevent, or that the people would not tolerate such action, has a strange understanding of its own legal power and moral responsibility.

In representing itself as a passive effect of its own legal authority, the state adopts a circular form of peripheral thinking which renders it eternally peripheral to its own power in a spectacular act of legal misrecognition. Of course, the state could introduce a Bill to remove Article 40 3 3. It could decriminalize abortion. It could promote an interpretation of Article 40 3 3 that recognizes substantive differences between pregnant women and fetuses, and permits domestic abortion in a way that would likely reduce the outward flow. But it chooses not to.

Conclusion

States, particularly the Irish state, have actually been quite creative in responding to their residents’ practices of travelling abroad for care that is restricted at home. They have used a range of regulatory techniques that have effects on cross border care flows. In the case of law and policy on abortion-related flows, these different techniques present challenges and resources to those of us who wish to make abortion access easier. First of all, we need to throw our net more widely when we try to capture legal tools that have an effect on women’s abortion practices. The legal instruments which restrict women’s access on the territory of the nation-state are significant. Inverted peripheral thinking, which denies harms to women while celebrating care of the ‘unborn’ as a marker of international leadership, arguably takes care and international norms seriously, but requires redirection.

But as women’s cross-border abortion practices illustrate, norms of domestic restriction are not the only legal instruments that are significant. Regulatory measures that promote non-judgmental information and counselling and provide public funding do acknowledge extra-territorial abortion use and attempt to reduce harms to travelling women. Working with such tangential peripheral thinking may provide further opportunities to destigmatise abortion and promote a harm reduction framework. And finally, the kind of circular peripheral thinking, which sees the state deny its own power to have an impact on care flows, provides welcome opportunities for reminding the state that women are not the only ones who bear public responsibilities for care provision.

PS I wrote this before the news of the recent abortion refusal case broke.  My initial thoughts on that failure in abortion care are here: http://humanrights.ie/constitution-of-ireland/contesting-cruel-treatment-ruth-fletcher/

If you would like more information about civil society’s campaigning responses to this case and more generally please see: http://www.abortionrightscampaign.ie and https://www.facebook.com/pages/Speaking-of-Imelda/571659212932533

Comments welcome.

Crisis Compounded? Legal Aid, Feminist Advocacy, and the Budget Cuts in British Columbia, Canada

By Agnieszka Doll

Since 2002, the successive governments of the Canadian province of British Columbia (BC) have enacted large-scale budget cuts to state-funded legal aid. The Canadian Centre for Policy Alternatives researchers reported that in 2002 provincial funding for legal aid has been cut by 40 percent (Brewin & Stephens, 2004; Govender & Milne, April 9, 2013) The most severe reductions were implemented in areas of family law, poverty law, and immigration legal aid. In fact, by the 2010 the legal aid representation in poverty and immigration cases was completely eliminated, while in family law, such representation has been limited to high risk cases (Brewin & Govender, 2010; Brewin & Stephens, 2004). In addition to difficulties in receiving legal representation, access to legal information has been also limited by changing eligibility threshold, substituting direct contact with lawyers with online and telephone service, and reducing the number of legal clinics. While legal aid in BC was considered insufficient even before the reductions, the cuts further deepened the crisis by limiting access to justice for the most marginalized populations (Morrow, Hankivsky, & Varcoe, 2004).

Feminist scholars (Morrow et al., 2004) have specifically argued that the cuts have a clear gender dimension. Firstly, prevalence of poverty among women, including those who experience intimate violence, renders women particularly disadvantaged by legal aid cuts as they often rely on state-resources for their access to justice (Sarophim, 2010). Secondly, the implemented cuts predominately targeted services related to family, civil or poverty law, which women tend to use more often that, for instance, services related to criminal law that received no similar cuts and that tend to be more frequently utilized by men. Third, concurrent implementation of changes limiting state funding for women’s organizations and subjecting funding to competitive distribution model, shattered existing infrastructure of research and advocacy-based organizations that are often unable to compete with for-profit organizations for service provision (Knight & Rodgers, 2012).

In the midst of those changes, I conducted (between 2008-2009) a qualitative study in one B.C women’s organization through which I explored how the organization’s staff experience delivering law-related services to women or helping these women access justice in the context of the budget cuts. I was also interested in learning about the extent to which existing legal services meet specific needs of immigrant women who experience intimate violence.

My interviews with the organization’s frontline staff and its administrators, as well as a focus group and hours of observations revealed three major findings regarding the consequences of government cuts on service offered by the organization:

1)      The organization went through severe employment shifts. For example, at the time of my research, the Victim Assistance Program – designed to assist women who experience abuse in navigating their criminal cases through the criminal justice system – lost all of its previous employees and was run by a new staff. Such shifts in the staff composition complicate the organization’s court presence; the previously established relations with the court personnel often need to be rebuilt, which takes significant amount of time and effort. Thus, the cuts contributed to shattering the organization’s credibility as legal advocates by affecting its ability to remain visible to justice and police administration.

2)      The organization became dependent on volunteer work. For example, the women’s center, which is often the first contact point for women seeking legal services, was forced to substitute the loss of three fourth of its professional staff with work of volunteers. This restructuring has consequences on the quality of information received by women who come for legal guidance. Since volunteers provide their help occasionally, their skills are mostly used to support the basic functioning of the center not to provide information about legal aid service to women in need. Often, they do not have the related professional training.

3)      Given changes in priority areas funded by the government, the organization adjusted their own services accordingly. Previous focus on feminist political awareness raising about the nature of gender inequalities or feminist advocacy gave way to emphasis on short-term relief services provided to the victims of gender violence. As organizations became forced to compete with each other for resources, they started to internalize the idea of self-sufficiency as their key for survival. Thus, instead of sharing resources such as translation services, etc. with other organizations, applying for own funding came to be regarded as a strategy of ensuing inflow of additional money to the organization.

One important implication of my study I would like to highlight is the impact of budget cuts on feminist organizations’ potential to pursue advocacy for women in the courts, in the police, and in other law enforcing institutions. While the budget cuts to legal services evidently degenerated the position of women experiencing violence who need to represent themselves in courts and often surround their rights, truly successful legal representation amounts to more then just having a lawyer. It would not be novel to say that the gender stereotypes still prevail in the criminal justice system; the domestic violence cases are considered of a lower importance to other criminal cases, and the knowledge of intimate violence by court, police authorities, but also by lawyers is often not sufficient. Thus, survivors-centered advocacy shall be considered as complementary to prosecution or to other legal procedures resulting from or linked to gender violence so the needs of women are addressed by judicial decisions (Nichols, 2013). I would like to also suggest that individual-level advocacy pursued on the ground by feminist advocates is instrumental for fair and equal access to justice for women, similar, as it is to the needs-based access to legal aid. The structural –level feminist advocacy needs to continue to expose the link between the gendered socio-structural inequalities and gender violence. Those important dimensions of women’s and anti-violence movements have been seriously jeopardized by the discussed budget cuts. The quest for funding had the effect of pushing women’s organizations to depoliticize and subvert feminist ideas about the relationship between gender, violence, and structural inequalities and, instead, adopt “a Band-Aid” solution to gender violence and channel their advocacy efforts. This way, by undermining the potential for feminist advocacy through budgets cuts, the B.C. governments made effective steps towards reinforcing gender order through legal means and within legal system.

Bibliography:

Brewin, A., & Govender, K. (2010). Rights-Based Legal Aid: Rebuilding BC’s Broken System. Retrieved from Canadian Centre for Policy Alternatives website: http://www.policyalternatives.ca/sites/default/files/uploads/publications/BC Office/2010/11/CCPA_Legal_Aid_web.pdf

Brewin, A., & Stephens, L. (2004). Legal Aid Denied: Women and the Cuts to Legal Services in B.C. BC Office: Canadian Centre for Policy Alternatives and West Coast LEAF.

Govender, K., & Milne, K. (April 9, 2013). BC’s Publicly Funded Legal Aid is in Crisis. Retrieved from Canadian Centre for Policy Alternatives website: http://www.policyalternatives.ca/publications/commentary/bc%E2%80%99s-publicly-funded-legal-aid-crisis

Knight, M., & Rodgers, K. (2012). “The Government Is Operationalizing Neo-liberalism”: Women’s Organizations, Status of Women Canada, and the Struggle for Progressive Social Change in Canada. NORA – Nordic Journal of Feminist and Gender Research, 20(4), 266-282. doi: 10.1080/08038740.2012.747786

Morrow, M., Hankivsky, O., & Varcoe, C. (2004). Women and Violence: The Effects of Dismantling the Welfare State. Critical Social Policy, 24(3), 358-384. doi: 10.1177/0261018304044364

Nichols, A. J. (2013). Meaning-Making and Domestic Violence Victim Advocacy: An Examination of Feminist Identities, Ideologies, and Practices. Feminist Criminology, 8(3), 177-201. doi: 10.1177/1557085113482727

Sarophim, J. (2010). Access Barred: The Effects of the Cuts and Restructuring of Legal Aid in B.C. on Women Attempting to Navigate the Provincial Family Court System. Canadian Journal of Family Law, 26(2), 451-472.

‘Who is Helping Who?’ – Co-Production and Professional Boundaries within Social Care services.

By Nick Andrews

I have been working in education and social care for thirty years, and have seen various new initiatives and buzz words come and go, whilst the fundamental principles of humanity remain the same. ‘Co-production’ in its truest senses is grounded in these principles. However, as with the concepts of ‘personalisation’ and ‘reablement’, there is a real danger that the term  ‘co-production’ is misused for hegemonic purposes to cover up what is essentially a cost cutting exercise. Under this scenario, individuals and their communities are expected to take on more responsibility for their own well-being whilst the machine of impersonal and ‘professionalised’ public services carries on as it always has done, albeit it with a few less staff employed. In my opinion, this would be a travesty and missed opportunity to restore warm humanity as the driving force for public services, not compliance with increasingly centralised and de-personalised processes and systems.

One of my favourite quotes by the theologian Martin Buber is ‘all real living is meeting’. Please note that Buber’s understanding of the term ‘meeting’ is much richer than the idea of putting a group of people together in a room or placing nurses and social workers in the same office, which is commonly assumed to result in integrated practice. I am sure many people will share my experience of being in meetings where no one actually met, where each person had their own agenda and the purpose of the meeting was to get this across – to win the argument.  For Buber, ‘meeting’ is about genuinely connecting with other people and being changed in some way by the process. In order to explain this process, he talks about two ways of relating to people and the world, which he calls ‘I-It’ and ‘I-Thou’.

In ‘I-it’ relationships, the person is detached and unaffected. In ‘I-Thou’ relationships, the person is attached and vulnerable. Tom Kitwood, in his seminal book ‘Dementia Reconsidered – The Person Comes First’ talks about his experience of seeing how people living with dementia were dehumanised through receiving emotionally detached task based care:

‘A man or woman could be given the most accurate diagnosis, subjected to the most thorough assessment, provided with a highly detailed care plan and given a place in the most pleasant of surroundings – without any meeting of the I-Thou kind ever having taken place’ (Kitwood, 1997)

By contrast, I believe that genuine co-production facilitates and nurtures the development of ‘I-Thou’ relationships between all parties, which in so doing begins to challenge the prevailing understanding of professionalism and professional boundaries.  In relation to this, I am currently co-ordinating a NISCHR and Joseph Rowntree Foundation (JRF) funded project in Wales, which is focused on the use of evidence from their ‘A Better Life – for older people with high support needs’ programme, along with other forms of evidence in social care service and workforce development.

The ‘A Better Life’ programme has identified that relationships are key and ‘Often it is the simple things that bring the most pleasure (and the lack of them can bring a sense of sadness and loss) and services do not always seem to be very good at delivering ‘the ordinary’’. (Blood, 2013 p13)

The research challenges also call for a different way of working, which is often alien to the world of emotionally detached and compliance focussed task based care, which is summed up nicely in the following quote by Edgar Cahn:

‘The world of helping others in need is now built around one-way transactions…. and with the best of intentions, one-way transactions often send two messages unintentionally. They say: “We have something you need – but you have nothing we need or want or value.”’  (Cahn, 2004).

In a series of recent focus groups and learning events involving older people, carers and frontline staff, I have been struck by how many people feel that current regulation and guidance is risk averse restrictive and at worst destructive of human relationships. For example, workforce regulation states ‘the inappropriate use of touch is not permissible’, rather than ‘the appropriate use of touch is fabulous and to be encouraged’. This is a particular issue for people living with dementia, who often have to express themselves and connect with others through feelings and emotions. Frontline staff talk have talked about feeling guilty when they do little kind things that are not written in the Care Plan or receiving small gifts of appreciation, older people have been ‘told off’ (in the name of health and safety) for pouring tea for others in day services, and carers have been made to feel that they no longer have a role when the person they love goes into a care home.

At the heart of co-production, is an understanding that everyone has something to contribute and that exchanging these contributions is enriching for everyone concerned.  I am reminded of the work of Jean Vanier, who established the L’Arche Communities in learning disability services. Vanier did not see his role as caring for people with learning difficulties, but rather sharing his life with them and being open to receive and learn from them as much as to offer them support.

I am reminded of one of my earliest experience of working in social care services. It was 1984 and I had started my first job as a residential support worker in a children’s home. I thought I was the ‘sorted one’ who was employed to help others. I worked hard to form good working relationships with staff and children in the home, but one boy, who had experienced a lot of hurt in his life, kept his emotional distance. As anyone who knows me well can tell you, I am not gifted in DIY or anything that involves fixing something mechanical. One day, I was trying to repair my bicycle (I did not drive at the time) and was getting nowhere fast. The boy walked past me and said ‘I’ve got a book about repairing bikes, do you want to borrow it?’. I am pleased to say that I took up his offer and our friendship took off from that day. He is now a happily married 43 years old who lives on the other side of the country, but we still keep in contact via Facebook and phone and offer each other support and encouragement whenever we can.

Jean Vanier once said, ‘I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes’. This is an important message for social care practitioners and agencies. We need to open our ears, our eyes and our hearts to the people we work with, which might involve sharing our vulnerabilities and concerns and allowing ourselves to be changed by genuinely ‘meeting’ with them in truly co-productive relationships.

 

References

Blood, I. A Better Life – Valuing Our Later Years, York, Joseph Rowntree Foundation, available at: http://www.jrf.org.uk/publications/better-life-valuing-our-later-years

Cahn, E. (2004), No more throw away people – the co-production imperative, Washington, Essential Books

Condemned as a ‘Typical’ Man?

By Robin Hadley

A few moths ago, I attended a seminar on infertility treatment. The audience included those involved in infertility treatment, academics, practitioners, and interested others. The complexities surrounding infertility treatment are vast and range from the very intimate and personal to legalities at national and international level. Conducting research in such a sensitive area is fraught with difficulties and the speakers were all very aware of the ethical implications of their research and practice. I was particularly interested in the researchers’ experience of accessing and interviewing men. The general view in infertility studies has been that men are not interested in participating in research, and many studies are heavily weighted with female respondents. As one researcher described her many efforts to interview the male partner of a couple, a ripple of sympathetic recognition of her struggle arose from the audience. ‘Typical man’ seemed to be the collective verdict, mine included. As I reflected back on the day I returned to that incident. The audience reaction was one of sympathy for the researcher and I wondered if that man did not also deserve some empathy. I know from my own research that many men assume that they will be fathers and that that knowledge is so embedded that it is not discussed. The assumption expressed has been that one would leave school, get a job/go to university/ get a job, find a partner, find accommodation, have children. That being the case I tried to put myself in that man’s position: the assumed ‘natural’ event had not happened. How would I feel? Shocked to the very core? I think so. Perhaps I had been brought up not to show feelings and instead, to show control – ‘mastery’ – through actions and/or rationality. In which case my reactions may include striving to balance things up by working and playing harder, or not becoming involved. Being raised in an environment where I am not expected to express emotions, I possibly, do not have the confidence or vocabulary to verbalise my emotional state. Here are my musings on what may have been ‘going on’ if I was that unwilling participant, “So, here I am, not fulfilling the role I expected to – and that others seem to achieve with ease – and I cannot make it right. There is only one person I can talk to and that is my partner but it is worse for her and the one thing I can be is strong for her. Then there is this University researcher who wants to have a talk. She’s talked to my partner, and wants to talk to us both. My partner thinks it will do me good. I don’t know how to express these feelings inside without bursting. I want to support my partner, part of me thinks it would be good to release the emotions but I can’t risk overwhelming her in the way I am sometimes overwhelmed. I’ll say I’ll do it and then see.”
If the participant’s thoughts and feelings were similar to the above then it is understandable why he was ambivalent about being interviewed.

Infertility has been seen as a form of complex bereavement consisting of multiple loses (Adler, 1991; Lechner et al., 2007) with levels of distress in women recorded as high as those suffering from serious medical conditions (Domar et al., 1992; Domar et al., 1993). However, recent research shows that, post infertility treatment, men who did not become fathers suffered poorer mental health than those who had become fathers (Fisher et al., 2010). In their conclusions Fisher et al (p.6) state ‘…that stereotypes that infertile men conflate fertility and masculinity, are less distressed than women about potential loss of parenthood, and adjust more readily to childlessness appear inaccurate.’ Men may or may not be ‘typical’ by choice but there are many social factors that influence their behavior and how their behavior is perceived. The belief that men are not interested in taking part in research, and their absence ‘condemned to be meaningful’ (Lloyd, 1996: p.451), reflects a lack of insight by the research community. I feel I must stress here these are my own reflections based on my research on involuntarily childless men and not a particular person or persons.

Useful websites
Infertility Network UK: http://www.infertilitynetworkuk.com
The Human Fertilisation & Embryology Authority: http://www.hfea.gov.uk/index.html
Mensfe: http://www.mensfe.net

References
Adler, N. E. (1991). Forward. In Stanton, A. L. & Dunkel-Schetter, C. (Eds.), Infertility: Perspectives from Stress and Coping Research (pp. vii-ix). Plenum Press: New York.
Domar, A., Broome, A., Zuttermeister, P. C., Seibel, M. & Friedman, R. (1992). The prevalence and predictability of depression in infertile women. Fertility and Sterility, 58, 1158-1163.
Domar, A. D., Zuttermeister, P. C. & Friedman, R. (1993). The psychological impact of infertility: a comparison with patients with other medical conditions. Journal of Psychosomatic Obstetrics and Gynaecology, 14(Special issue), 45-52.
Fisher, J. R. W., Baker, G. H. W. & Hammarberg, K. (2010). Long-term health, well-being, life satisfaction, and attitudes toward parenthood in men diagnosed as infertile: challenges to gender stereotypes and implications for practice. Fertility and Sterility, 94(2), 574-580.
Lechner, L., Bolman, C. & Van Dalen, A. (2007). Definite involuntary childlessness: associations between coping, social support and psychological distress. Hum. Reprod., 22(1), 288-294.
Lloyd, M. (1996). Condemned to be meaningful: Non-response in studies of men and infertility. Sociology of Health & Illness, 18(4), 433-454.

The Right to Assistance – The Public Duty to Assist by Jane Krishnadas

The Hands of the CLOCK; Rights as the Intersections

Since the Legal Aid Sentencing Punishment and Offenders Act, 2012 – ‘The Government’s evisceration of Legal Aid leaves those of us involved in the court system feeling a bit like the  inhabitants of an island about to be hit by a tsunami… (Saunders, The Lawyer, 2013).  Having lived, worked and researched in a post-disaster situation, the comparison may seem extreme. However, one year after LASPO, the collaborative efforts of the Community Legal Outreach Collaboration Keele, (CLOCK), have been just in time to assist more than 100 litigants a month facing the loss of livelihood, property or families, which replicated across the UK reaches the disaster scales of 100,000’s of people.

Theoretically, the comparison of the post-disaster sites lies in Arendt’s framework of diminished agency and a declining state (The Human Condition), within which I’ve explored the role of rights within different ‘Scales of Justice’ (Fraser), as a transformative rights strategy; reflecting voices, revaluing resources and relocating sites of justice; (Rights as the Intersections, A Transformative Methodology).

CLOCK

CLOCK Logo

The CLOCK logo presents a visual and practical blueprint of the interrelation of rights and duties within the local justice system (see CLOCK partner leaflet). The Community Legal Outreach Collaboration, Keele (CLOCK) was formed as an umbrella of professional public, private and third sector organisations, to develop a new role ‘the Community Legal Companion’, premised upon the McKenzie Friend principles,  to safeguard the litigant- in-person’s rights to assistance and access to legally-aided and affordable legal services, within the shared commitment to access to justice.

The Community Legal Companion is centred within CLOCK, reflecting Crenshaw’s principle ‘that those concerned with alleviating discrimination’ should begin with ‘addressing the needs and problems of those who are most disadvantaged… for which placing those who are currently marginalised in the centre is the most effective way to resist efforts to compartmentalise experiences’ (‘Demarginalising the Intersection of Race and Class’, Crenshaw, 1989; 167).

However the Legal Companion presents a different starting point to Martha Fineman’s ‘Vulnerable Subject’ (2008). The Legal Companion is an assistant to the legal subject, premised upon the right to reasonable assistance which is embedded within the McKenzie Friend Practice Guidance, July 2010. The text clearly affirms ‘The Right to Reasonable Assistance’. Critically the right of assistance is the right of the litigant. It is not a right of the gratuitous, commercial or politically motivated McKenzie Friend.

The Legal Companion cannot act as an agent for the individual and has no authority to act or speak or advise in any way on behalf of the individual. The litigant’s voice therefore remains their own, as does their actions and decisions- in the words of a litigant, the legal companion is ‘My Calm in the Storm’ (BBC Radio Stoke Discusses Legal Aid and CLOCK).

It is the duty of the court to grant the right of assistance, or provide sufficient reasons why the litigant should not receive assistance. The decision of the court is based upon procedural fairness, the right to a fair trial and the efficient administration of justice. The Chair of the Civil Justice Council Working Party on Access to Justice for litigants-in-person states ‘It is impossible to overstate how important it is for people to have access to justice in a free society”, and calls for ‘concerted leadership to drive collaboration’ (Civil Justice Council Calls for Action).

The CLOCK dial represents a collaborative shared duty to the right of assistance. The Courts provide training on the court forms for suspending evictions, debt, divorce and Children Act applications. The Police and CPS provide training on bridging the civil and criminal processes. The Charitable organisations, circle the CLOCK, providing supporting evidence for legal aid applications, and holistic support; the first quartile, housing and complex needs, Brighter Futures, ASPIRE; the second, family relations, YMCA Family Services, Arch, Savana, Voices of Experience;  the third, community safety, Savana and the fourth, welfare and discrimination, Staffordshire North and Stoke-on-Trent Citizens Advice Bureau, SNCAB. The inner circle of the partner law firms Nowell Meller, Salmons, Young and Co, Lichfield Reynolds and colleagues within the North Staffordshire Law Society‎, and Regent Chambers and Rowchester Chambers,  ensure the companion acts within the professional duty to refer to mediation, legally-aided and affordable legal services. (See: Law Society Litigant in Person, Practice Note; and Bar Society: Guide to Representing yourself in Court).

The legal companion, provides a holding hand, the hands of the clock, to pivot the range of public, private and third sector services, which intersect the complex nature of shattered lives (see Intersectionality and Beyond) for which legal companions have assisted clients to trace multiple legal pathways through criminal, civil, welfare, immigration and domestic violence services (BBC News, Keele students help legal aid gap).

The daily presence of the legal companions in the court, presents a mechanism to draw together evidence to satisfy legal aid criteria, monitor the scope and impact of LASPO on the local community and highlight cases to challenge the fairness of s.10, LASPO, as recommended in the R.1, R.3, and R.4, of the Low Commission Report, Jan 2014.

The hands of the CLOCK  reached the hour, when the Head of Legal Aid visited the domestic violence refuge and listened to ‘Voices of Experience’, to contribute their perspectives on access to legal aid to the  Parliamentary Debate on Baroness Scotland’s Civil Motion to Regret (Head of Legal Aid Commends Legal Companion CLOCK initiative, as “a really positive initiative and could provide a model for similar programmes across the country”).

The endorsement of CLOCK as: an ‘imaginative scheme’ from the Stoke-on-Trent Judiciary; ‘a strategic development in legal education’ (the HEA, Strategic Summit, 2014); an ‘excellent service which epitomises the practical implementation of several of the Working Party’s recommendations’, (Civil Justice Council) and a case study of ‘good practice’ within the Legal Services Consumer Panel Fact Finding Visit, has secured the interest for wider collaboration from Birmingham, Birmingham City and Wolverhampton Courts and Law Schools.

CLOCK has maintained its momentum via the pendulum of in-kind resources, exchanging the costs of court, police, CPS, solicitor barrister and local council time with the experience of the legal companion assistance to navigate the most direct and supported pathways to meet unmet legal needs.

As the past President of the Law Society concludes ‘Sadly the cuts are inevitable’ it may be important to remember the Public interest litigation (S. Krishnadas v Government of Maharashtra). Filed by the, then, law student who initiated the Social Legal Information Centre, Omerga, to fact find information, and with the support of the independent judicial inquiry on the constitutional right to equality won a High Court order for the State to provide financial compensation, housing and basic needs to the earthquake-affected population (see with Krishnadas Sukumaran, Reclaiming Rights, Pluto Press, forthcoming).

Twenty years on, the comparison may seem a travesty, with in effect, “the cessation of the ‘Legal Aid’ programme as it was and its evolution into a new mutation with centralised and commercial controls run from regional centres”, yet the provision of a local service (CLOCK) with “access to citizens in the community will become a resource of huge importance for those who rely on the use of the national legal system. The City which holds the ‘signed’ Magna Carta should also seek to set an example of the standards of performance expected of that document” (David Hallmark, CBE, Worcester Law Society, Visiting Fellow, Oxford. See 2015: Unification of the four surviving original copies of the Magna Carta, celebrating the 800th anniversary of the issue of the Charter).

It is at this intersection in time, where the hands of the CLOCK may indicate a potential for ‘remaking and restructuring the world’, (Crenshaw, 1989; 167)… or at least to bridge our constitutional rights and duties within local spheres of justice… time will tell.

Please note that with due regard to the wider CLOCK partnership, this is a personal narrative of my experience and views. For further information please contact j.h.krishnadas@keele.ac.uk

‘Applying Critical Psychology: Or starting a support and advocacy group for people with dementia who are lesbian, gay, bisexual or trans’ by Professor Elizabeth Peel

Critical psychologies share two common concerns. One is a critical perspective on the theory and methods of mainstream psychology: ‘[critical psychology] believes that psychology has adopted a paradigm of inquiry that is ill-suited to understanding human behaviour and experience’ (Sampson, 2000: 1). The field is concerned to undermine the positivist-empiricism of mainstream psychology, which has been (and continues to be) used to deter social change and to buttress the status quo; it is argued that traditional liberal norms of research ‘provide ideological support to dominant institutions and channel psychologists’ work and resources in system-maintaining rather than system-challenging directions’ (Fox, 2000: 22).  The other key concern is with progressive politics in some form; aligning with oppressed groups and urging psychology to work towards social justice. Or as Prilleltensky (1999: 100) puts it, critical psychology ‘is critical of society as much as it is critical of psychology’. According to Prilleltensky (1999) critical psychology is premised on the view that the current societal status quo oppresses various social groups and that conventional psychology is a tool in maintaining the status quo, because of this critical research should be a more practical endeavour. Critical psychologists are also united in opposition to conventional psychology, because of mainstream psychology’s ‘history of racism, sexism, heterosexism…[and] with its modernist pretensions to scientific expertise, is not a platform from which we wish to speak’ (Condor, 1997: 112). The consensus within critical psychology is a tentative one, but psychologists claiming criticality do, according to Condor (1997: 111), share common interests which include: ‘an attack on universalistic assumptions of human nature; a critique of individualism; an interest in social context and a broad commitment to contructionism; and a concern with text and talk’. Therefore, the gaze of critical psychology is directed both inwards, towards the discipline of psychology aiming to undermine and critique its research questions, theory, and methods, and also outwards, to society with the goal of  ‘be[ing] used at the service of the oppressed’ (Prilleltensky, 1999: 103).

So in the service of the oppressed I am in the process of setting up a support and/or advocacy group for lesbian, gay, bisexual and trans (LGBT) people with dementia, in partnership with the University of Worcester Association for Dementia Studies, Birmingham LGBT Centre for Health and Wellbeing and PACE Health London. We know that LGBT people with dementia are especially marginalised communities and that the issues impacting LGBT people with dementia are under represented (read: largely absent) in generic dementia groups and charities (Alzheimer’s Society, 2013). What haven’t been heard, to date, are the voices of LGBT people with dementia themselves. The nominally titled ‘Over the Rainbow’ project aims to offer:

1) an opportunity for LGBT people with dementia to come together in safe spaces;
2) facilitate intergenerational dialogue, support and advocacy;
3) allow the voices of LGBT people with dementia to be heard beyond the life-time of the project (via ongoing ‘dementia rainbow friends’ buddying, and online representation).

By working collaboratively with Birmingham LGBT Centre and PACE Health London my hope is that the ‘Over the Rainbow’ project will become embedded in the work of these third sector organizations and therefore sustainable over the longer-term.

The project is funded by DEEP (Dementia Engagement and Empowerment Project), in partnership with Innovations in Dementia, Joseph Rowntree Foundation, the Mental Health and Foundation and supported by Comic Relief.

With luck this project will create significant opportunities for LGBT people with dementia, and their carers, to self-advocate and raise the profile of this group of people with dementia both within generic dementia organizations and within LGBT communities. But first, there is the considerable challenge in reaching out to this hidden population. If you have any contacts or links, or would like to get involved do contact me on e.peel@worc.ac.uk Twitter: @ProfPeel

References

Condor, S. (1997) And So Say All of Us?:  Some thought on ‘experiential democratization’ as an aim for critical social psychologists. In T. Ibáñez & L. Íñiguez (Eds.) (1997) Critical Social Psychology. (pp. 111-146) London: Sage.

Fox, D. (2000). The Critical Psychology Project: Transforming society and transforming psychology. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 21-33). Basingstoke: Macmillan.

Prilleltensky, I. (1999) Critical Psychological Foundations for the Promotion of Mental Health. Annual Review of Critical Psychology: Foundations, 1, 100- 118.

Sampson, E. (2000) Of Rainbows and Differences. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 1-5). Basingstoke: Macmillan.

Biography
Elizabeth Peel is Professor of Psychology and Social Change in the Institute of Health and Society, University of Worcester, UK. Her research has explored diabetes self-management, same sex relationships and families, and diversity training. She holds a British Academy Mid-Career Fellowship for the Dementia Talking: Care, conversation and communication project. She won the BPS Psychology of Sexualities Section outstanding academic writing award 2012, and book awards from the American Psychological Association’s Division 44 for the co-edited volume Out in Psychology (Wiley, 2007) and in 2013 from the British Psychology Society for Lesbian, Gay, Bisexual, Trans and Queer Psychology: An introduction (Cambridge University Press, 2010).

 

Empowering the Voices of LGBT Individuals with Dementia

A seminar in London organised by the Dementia Engagement and Empowerment Project (DEEP) and facilitated by myself, was attended by over 40 people this week, to discuss how we can give greater individual and collective voice to lesbians, gay, bisexual and trans (LGBT) people with dementia. Attendees included dementia service providers and advocates, older LGBT service providers and advocates, older LGBT people themselves, and academics working in the field of LGBT ageing and/or dementia. There were three excellent speakers: Rachael Litherland from DEEP; Sally Knocker (trainer, consultant and writer) and Dr Elizabeth Price (Senior Lecturer, University of Hull). Two short films were shown: one from Opening Doors London (which includes a gay men with memory problems in need of befriending and extra support) and a training clip from GenSilent (which features, among others, a gay couple dealing with one partner’s dementia; a lesbian couple pondering their future care needs; and a trans women who is dying, is estranged from her family, and lacks support). One of the most amazing things about the seminar was that it started without us! Many people arrived early, some by almost an hour, and struck up vibrant and deeply engaged conversations. These continued even after we introduced the planned bits of the seminar, and went on over the tea break, and into the group discussions which then followed.

LGBT individuals with dementia are not one homogenous group (1). As dementia is age-related and women outlive men, then older lesbians and bisexual women are likely to be disproportionately affected by dementia (women outnumber men with dementia 2:1) (2). This, together with relatively diminished social support in later life, means that older lesbians are likely to also be disproportionately represented in care homes for people with dementia. By contrast, gay and bisexual men who do find themselves in those spaces will be a minority in a minority due to both gender and sexuality. Many LGB people are impacted by the lack of recognition of LGB carers of someone with dementia (3) and of LGB health and social care service users, including in dementia provision (4). This is nuanced by gender: older women are particularly concerned about being around potentially sexually disinhibited behaviour of heterosexual men with dementia; and many older lesbians and gay men want integrated provision, but many also want gender and/or sexuality specific care. This is also nuanced by sexuality: many bisexual individuals suffer from the disappearing ‘B’ in LGBT (5), being assumed to be heterosexual if single or in a relationship with a person of another gender and being assumed to be lesbian or gay if in a relationship with someone of the same gender.

Trans individuals (who may or may not identify as LGB) are concerned with both shared and particular issues (6). Those particularities include: concerns about transphobia; being worried about not being able to cross-dress; being very concerned about receiving personal care if their physical bodies are not congruent with their gender performance; and, among those who have transitioned, being concerned that if they have dementia, as it progresses, they may no longer remember that they have transitioned, and may revert to performing according to the gender which they were assigned at birth.

A wide ranging number of themes emerged across the seminar. These included: the issue of how to ‘find’ LGBT people with dementia who may be hidden both by their dementia and by their sexualities and/or gender identities; the importance of making sure any project which aims to empower LGBT people with dementia is driven by LGBT people with dementia; concerns about heteronormativity, homophobia, biphobia and transphobia among dementia service providers and dementia service users; the importance of training and practice development among service providers (7); the importance of both mainstream providers and the LGBT ‘community’ taking responsibility for addressing these concerns; and the need to take into account the needs of queer/polyamorous/non-labelling individuals with dementia who can often be hidden in generic LGBT discourse.

All attending the seminar were agreed that it was a very successful and stimulating event, and hopefully would lead on to the development of a number of different projects which will give greater voice to LGBT individuals with dementia in the future. A range of possibilities were discussed, including making mainstream dementia advocacy more inclusive of LGBT individuals with dementia, and LGBT intergenerational projects, which would involve LGBT befrienders supporting LGBT individuals with dementia. DEEP will be keeping all those who attended informed in future developments. Anyone wishing to know more, should contact the Dementia Engagement and Empowerment Project (DEEP)

(1) Newman, R. and Price, E. (2012) ‘Meeting the Needs of LGBT People Affected by Dementia,’ in R. Ward, I. Rivers & M. Sutherland Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, pp183- 195, London: Jessica Kingsley. [Accessible via: http://bit.ly/1dGiQCb]

(2) Knapp, Martin, et al. (2007) Dementia UK: a Report to the Alzheimer’s Society. London: Alzheimer‘s Society.

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

(4) Ward, R., River, I. & Sutherland, M. (eds) (2012) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London: Jessica Kingsley

(5) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’, in: Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care (10), pp 42-55, Edinburgh: Dunedin Academic Press, pp. 42–55.

(6) Auldridge, A., et al (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality

(7) Suffolk Lesbian, Gay, Bisexual and Transgender Network (2012) Providing Quality Care to LGBT Clients with Dementia in Suffolk: A Guide for Practitioners; Alzheimer’s Society (2013) Supporting lesbian, gay and bisexual people with dementia. Alzheimer’s Society Factsheet 480. London: Alzheimer’s Society:

Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk