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

‘Defining and exploring “care practices”‘ by Kathryn Almack

With my colleague Andrew King (University of Surrey), I’m starting work on a paper which aims to explore informal care practices within the lives of older lesbian, gay and bisexual (LGB) people. This will problematize the framing of ‘informal care’ within policy that most often assumes that these forms of care take place either within assumed heteronormative familial relationships and/or within a dyadic relationship, with one person the ‘carer’ and one the ‘cared for’. We are drawing on ‘case stories’ which we’ve developed from our research with older LGB respondents, selected to represent wider issues within LGB communities and illustrative of a range of care practices, including care provided by friends and strangers, reciprocal care and other expressions of care within LGB communities. We anticipate our paper will also contribute to wider debates about the increasingly diverse range of family forms and social relationships that are not easy to name or recognize.

In developing this paper, we are also searching for our theoretical framework within which to situate this; the thoughts on this below are my own, although it will be something that I work on in collaboration and further feedback from members of the networks are welcome.

I’m leaning towards defining and exploring ‘care practices’ –  akin to Morgan’s (1999, 2011) concept of family practices – as a way to investigate and interrogate care and caring relationship and practices and in particular, unpack the meanings of such practices – emotional, relational, moral, and symbolic. The concept of family practices seeks to shifts the focus towards what families do rather than a focus on family structures; but nevertheless also recognising that at everyday levels the ‘family’ is still a term used by individuals to describe their most meaningful relationships. Morgan suggests that this perspective offers the possibility to see the family as ‘less of a noun and more of an adjective or, possibly, a verb’ (1999:16).

Care practices could encompass a whole range of practices that bind people together, that may include conflicts, tensions and ambivalence as well as affection and love. Thus addressing some of the complexities of care – interdependence, reciprocity, conflicts (workings of power/imbalance), resources, identities, moral deliberations, emotions, labour, working across time and space, involving networks as well as individuals and dyadic relationships.

There are of course other ways of theorising care, including carescapes and an ethics of care framework. Carescapes (Mckie et al 2002) seeks to add a dimension to thinking about care across time and space – the concept developed out of concerns focused on the changing yet gendered nature of caring for children and time-space relations implicit in combining caring and working and shifting roles as children grow (but that may have wider application to other relationships of care):

Mapping routes through the shifting and changing multi-dimensional terrain that comprises their vision of caring possibilities and obligations: routes that are influenced by everyday scheduling and by combining caring work through paid work and the paid work of carers (McKie et al 2002: 904)

And of course, an ethics of care framework has been developed and drawn upon to theorise values of care (key references include Tronto, 1993 and more recently Barnes, 2012) – involving both thought and action and placing value on notions of responsibilities of providing good care; valuing connectedness, incorporating values of dignity and respect. It seems to suggest and encompass a moral framework – though not prescriptive – about the delivery of care and how it is delivered. Is that distinct from or similar to the meanings ascribed to relationships through the doing of care?

I’m left with questions that I don’t yet have answers to. Are there overlaps between the three – care practices, carescapes and ethics of care? Is it that they have developed within different spheres and that they do say the same things in different ways or do they offer distinct contributions to debates on care?  All thoughts and ideas most welcome in taking these reflections forward.

 

Name, address, contact details.

Dr Kathryn Almack

Senior Research Fellow

B Floor, QMC

School of Health Sciences

University of Nottingham

Nottingham

NG7 2HA

 

Tel: +44 (0)115 8231204

Email: k.almack@nottingham.ac.uk

 

References:

Barnes, M. (2012) Care in Everyday Life: an ethic of care in practice. Bristol: Policy Press

McKie, L., Gregory, S. and Bowlby, S. (2002) Shadow Times: The temporal and spatial frameworks and experiences of caring and working. Sociology, 36,4:  897-924

Morgan, D. H. J. (1999) “Risk and family practices ” in Silva, Elisabeth B. and Smart, Carol (Eds.) The New Family? London: Sage Publications, pp. 13-30

Morgan, D. H.J. (2011) Rethinking Family Practices. London: Palgrave Macmillan

Tronto, J. (1993) Moral Boundaries: a political argument for an ethic of care. London: Routledge

Children and Families Bill 2013: Helping Parents to Reconcile Paid Work and Care?

The Children and Families Bill 2013 has just had its second reading in the House of Lords. One of the aims is to encourage fathers involvement in childcare and accordingly, fifty weeks of the twelve months maternity leave is to become available as parental leave to eligible parents (see the Bill 032 2013-14 as bought from the Commons, http://www.publications.parliament.uk/pa/bills/lbill/2013-2014/0032/14032.pdf, s89(1)). Increasing flexibility for parents may seem positive, but it is unlikely to result in a huge increase in fathers’ involvement in childcare. Indeed, it has been predicted that only 2% of eligible fathers will use any of the parental leave (http://www.publications.parliament.uk/pa/cm201213/cmpublic/childrenandfamilies/130307/pm/130307s01.htm, column 137).

With such small predicted uptake, it is questionable if the Bill could approach the reconciliation of work and care differently to better encourage fathers’ participation in childcare. The legislation currently considers care as something that needs to be accommodated in the workplace only occasionally, mainly during pregnancy and childbirth, and then fleetingly throughout the rest of childhood. However, these are obviously not the only times when people will need to combine paid work and their caring responsibilities. As has often been noted in the care literature, caring is an everyday and universal occurrence (see for example, M. Fineman The Autonomy Myth: A Theory of Dependency (The New Press, 2004)). Acknowledging this may allow and encourage fathers and others to become more involved in providing care. Therefore, an overarching change to the regulation of employment which would better accommodate caring responsibilities may have been more beneficial for fathers and all carers.

Recognising the universal nature of care may ensure that its importance is acknowledged. Generally, paid work is seen as the priority and any caring responsibilities are considered obstacles to this. Indeed, although much work has been done in regards to the reconciliation of paid work and caring responsibilities, most of it comes from an employment centric vantage. If the workplace is to better accommodate carers, the importance of care must be recognised. Caring can no longer be seen as an obstacle to employment, but as an everyday occurrence that will inevitably affect the workforce. Nicole Busby’s A Right to Care? Unpaid Care Work in European Employment Law (Oxford University Press, 2011) has been a vital contribution in this regard. She advocates a right to provide care alongside paid employment. Accordingly, rather than begrudgingly accommodating care when it cannot be avoided, it would be recognised as vitally important work which will regularly impact upon all people’s lives.

Better accommodating care and acknowledging its impact upon paid work may encourage more men, including fathers to increase their involvement in care. If caring is rightly acknowledged as an unavoidable part of normal life, the penalties associated with taking time out of employment will have to be removed. Accordingly, all people would feel more able to take leave from paid work. After all, leave will only be helpful if people feel that they can actually use it (S. Eaton ‘If You Can Use Them: Flexibility Policies, Organizational Commitment, and Perceived Performance’ (2003) 42 Industrial Relations 145). Therefore, a re-evaluation of paid work and the workforce is vital. If labour law is to better accommodate carers and challenge gender stereotypes regarding care, rather than introducing more sound-bite legislation, the acknowledgement of the importance and universality of care must fundamentally change the nature of paid work.

Care in the first two years of life: OXPIP and the emerging discipline of parent-infant psychotherapy

By Adrian Sell, Executive Director, OXPIP: The Oxford Parent Infant Project

OXPIP is one of the organisations pioneering parent-infant psychotherapy. Founded in 1998 we have been working in Oxfordshire to provide support to parents who are struggling to form a secure attachment to their baby. In the last three years we have worked with over 900 families and consistently improved mental health and the quality of the parent-infant relationship[1]. We work with babies up to the age of two and their parents, normally the mother but we have worked with many fathers as well.

Parent-infant psychotherapy is distinguished by the attention it brings to the mother’s mental health, the baby’s mental health and, crucially, to the quality of the relationship between parent and baby. This focus on the quality of the care that comes from this early experience is critical to our success in addressing intergenerational cycles of disadvantage. We all have a tendency to default to parenting our children as we were parented, even if those relationships were withdrawn, unpredictable or harmful.

Our clinicians are skilled at enabling parents to build and sustain closer relationships with their children. One of the therapeutic tools for achieving this is through modelling thoughtful, empathic ways of relating within the therapeutic relationship. For some of the parents we work with this is the first time they have really experienced being thought about and related to in this way; it can be a powerful tool for change, opening up new possibilities for how they in turn can relate to their babies.

Our team of psychotherapists come from a range of backgrounds including Child Psychotherapy, Adult Psychotherapy and Clinical Psychology as well as including prior qualifications in Health Visiting, Nursing, Midwifery, Social Work and Teaching. All have undergone Infant Observation training, and are trained in the use of video through the (NICE approved) Video Interaction Guidance approach. This mix of backgrounds and approaches gives our work a strength and rigour that forces us to constantly challenge our own preconceptions and viewpoints.

We are part of a growing national movement of people and organisations who are bringing greater focus to the first years of life. Our Executive Director, Adrian Sell is a trustee of PIP-UK a new national charity seeking to support similar services to develop elsewhere. We have backing from Impetus – The Private Equity Foundation where we are one of twenty-five organisations they see as critical social game-changers supporting disadvantaged children to develop to their full potential. We are a member of the Centre for Social Justice Alliance where we are recognised for our effectiveness in tackling the root causes of poverty and disadvantage. We are supporters of the All Party Parliamentary Group for Conception to Age 2 – the first 1001 days

We all instinctively know that the first few years of our life are formative. There is also considerable neuroscientific evidence that has emerged to support this. OXPIP are now at the forefront of developing an evidence base for the positive impact that parent-infant psychotherapy can have. If you want to find out more then please look at our website, get in touch or leave a comment below.

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

 

“Neighbourhood ‘care’ headed to graveyard of good intention”

By Bob Hudson, Durham University

Neighbourhood watch groups should apply for care status and provide help for older people to counter Britain’s “uncivilised” attitude to pensioners.

As well as looking out for potential burglars and keeping an eye out for neighbours gardens, watchers could also offer help to elderly neighbours, including washing and feeding.

Although attractive in principle, the evidence suggests it would be unwise to equate the concept of neighbourhood with assumptions about its capacity to create a rich social capital.

What makes good neighbours?

In a report with Melanie Henwood, we reviewed the sociological evidence of “neighbourliness”.

We found several things that shape our experience of neighbourhoods, including proximity – whether you live next door or in the next street – and how quickly you can pop round or help in an emergency, although the ability to help in an ongoing way is declining and more limited than it used to be.

How long you’ve lived somewhere and whether you’re considered a “newcomer” also shapes our experience as well as social polarisation – reciprocal neighbourhood care grows where information and trust are high, and where there are limited resources for satisfying needs in other ways – classic features of deprived and socially homogeneous neighbourhoods.

Communities and associations

In the 19th century, the sociologist Ferdinand Tonnies argued that in rural gemeinschaft (or community) groups, social order was based on a web of social ties – people knew each other in a range of multiple roles, such as parents, neighbours, co-workers, friends or kin.

But urban neighbourhoods were organised more like gesellchaft (or associations) with single-stranded ties – only knowing each other in single, specialised roles such as “the person next door” or the binman.

These structures have only intensified. Better transport, longer journeys to work, a wider geographical spread of friends and kin, a wider range of shopping and recreational opportunities, and more insular families, have all reduced the idea of neighbourhood as the central point of social interaction and social support.

The prospect of relying on those in the neighbourhood to help vulnerable neighbours with washing and feeding, let alone companionship (and especially in urban areas), looks remote.

Big Society and other attempts

The last Labour government invested quite heavily in a range of neighbourhood-focused initiatives but with little to show for the effort.

Evaluations of two initiatives they launched, the Neighbourhood Renewal Strategy and the New Deal for Communities programme, which both aimed to utilise community spirit to improve deprived neighbourhoods found little evidence of improved conditions or growth in social capital.

The idea of another programme was to employ a neighbourhood manager, supported by a small team, to drive local improvement and create community cohesion. Again, the results were less than fulsome.

More recently, there’s been the Big Society, the flagship Tory election policy to empower communities and take a more active role in looking after each other and providing local services. But despite the rhetoric, little has been heard of much trumpeted initiatives that fall under its umbrella, such as the National Citizen Service or the 5000-strong Community Organisers programme to “galvanise those around them to become more active”.

The Big Society concept itself has become something of a byword for failed politics.

Lamb’s idea

Where does this leave Lamb’s proposal? There is no doubt that he is on to something interesting with his focus on neighbourhoods. But it’s fanciful to think there is a huge store of social capital out there just waiting to be cultivated.

Neighbourhood policy and practice already crosses all sectors – informal, independent, statutory, voluntary and community. It also straddles many organisational and professional boundaries.

An area with around 10,000 people living in it, for example, is likely to contain primary health care services, community health services, adult and children’s social care and support, early years and primary school provision, neighbourhood policing, a community pharmacy, neighbourhood wardens of some sort, a number of voluntary and community groups, housing offices, commercial and leisure facilities, and some measure of social capital.

All of these contributions are important but they rarely act together. Now there’s a serious policy challenge with a huge potential pay-off.

Bob Hudson does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

The Conversation

This article was originally published at The Conversation.
Read the original article.

Key authorship on alternative care/kinship models to nuclear family

With the current media frenzy about the royal couple and their baby, I thought it timely to consider scholarship on alternatives to the nuclear family. Here’s a list to be starting off with, which hopefully others will help to grow, with their own suggestions:

  1. Auchmuty, Rosemary (2009) ‘Beyond Couples? Burden v the United Kingdom (2008)’. Feminist Legal Studies, 17: 205-218.
  2. Barker, Nicola (2006) ‘Sex and the Civil Partnership Act: The Future of (Non) Conjugality?’ Feminist Legal Studies, 14(2): 241-259.
  3. Barker, Nicola (2012) Not the Marrying Kind: A Feminist Critique of Same-Sex Marriage. Basingstoke:  Palgrave Macmillan
  4. Boyd, Susan and Young, Claire F.L. (2003) ‘“From Same-Sex to No Sex”?: Trends Towards Recognition of (Same-Sex) Relationships in Canada’, Seattle Journal for Social Justice, 1(3): 757–793
  5. Browne, Kath (2011) ‘“By partner we mean …”: Alternative geographies of “gay marriage”’ Sexualities, 14(1): 100-122
  6. Conaghan Joanne and Grabham, Emily (2007) ‘Sexuality and the Citizen Carer’ Northern Ireland Legal Quarterly, 58: 325-341
  7. Fineman, Martha A (1994) The Neutered Mother, The Sexual Family and other Twentieth Century Tragedies, London: Routledge
  8. Fineman, Martha A (2004) The Autonomy Myth: A Theory of Dependency. New York: The New Press
  9. Harding, Rosie (2011) Regulating Sexuality: legal consciousness in lesbian and gay lives. Abingdon: Routledge.
  10. Peel, Elizabeth and Harding, Rosie (2008) ‘Editorial Introduction: Recognizing and Celebrating Same-Sex Relationships: Beyond the Normative Debate’, Sexualities, 11: 659- 666
  11. Polikoff, Nancy D. (2008) Beyond (Straight and Gay) Marriage: Valuing All Families Under the Law. Boston: Beacon Press
  12. Richardson, Diane (2004) ‘Locating Sexualities: From Here to Normality’, Sexualities, 7: 391-411
  13. Robson, Ruthann (2009) ‘Compulsory Matrimony’, in M. Fineman, J. Jackson and A. Romero (eds) Feminist and Queer Legal Theory: Intimate Encounters, Uncomfortable Conversations, pp 313-328 Aldershot: Ashgate
  14. Roseneil, Sasha (2004) ‘Why we should Care about Friends: An Argument for Queering the Care Imaginary in Social Policy’, Social Policy & Society 3(4): 409–419
  15. Roseneil, Sasha and Budgeon, Shelley (2004) ‘Cultures of Intimacy and Care beyond “The Family”: Personal Life and Social Change in the Early 21st Century’, Current Sociology, 52(2): 135-159.
  16. Stychin, Carl (2006) ‘‘‘Las Vegas is not where we are’: Queer readings of the Civil Partnership Act’, Political Geography, 25: 899-920
  17. Warner, Michael (2000) The Trouble With Normal: Sex, Politics and the Ethics of Queer Life. Boston, MA: Harvard University Press.

 

Publication of the Irish Assisted Decision-Making (Capacity) Bill – Implications for Carers

At long last, on Wednesday 17 July, after many years and countless delays, the Bill to put in place a modern legal framework for people with impaired capacity in Ireland was published.  When enacted, the Assisted Decision-Making (Capacity) Bill will replace the Lunacy Regulation (Ireland) Act 1871 (so the need for modern legislation can hardly be overstated).  It is also intended that the new legislation will pave the way for Ireland to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which it has signed but could not ratify because the Lunacy Regulation (Ireland) Act was so evidently in breach of Art. 12 of the CRPD.  Whether the proposed Bill will actually be CRPD compliant remains open to debate (see one argument that it is not posted on Human Rights in Ireland blog) as indeed is the question of what exactly the CRPD requires in dealing with people with decision-making difficulties because of capacity impairment.

The legislation has been influenced by some Canadian legislative models and some of the ideas from Bach and Kerzner’s thought-provoking paper for the Law Commission of Ontario are also evident. The Bill introduces some important new concepts.  Among the most striking are the concept of a decision-assistance and co-decision making.  Both of these concepts try to address the requirement in Art.  12 (3) of the CRPD that ‘States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.’ Both concepts require the involvement of another person (a ‘decision-making assistant’ or a ‘co-decision-maker’ ) and it is clear that in many cases, the most likely person to fulfill the role will be a carer or family member. The assistant/co-decision-maker may be appointed by the person him or herself or by the court.

Looking at the Bill from a carer’s perspective, a couple of preliminary points emerge.  First, the functions of the decision-making assistant/co-decision-maker are extensive (s. 11 for decision-making assistant and s. 21 for co-decision-makers). Carers will be required to take on a legal role which, inevitably some will be more suited to than others.  In performing this role, carers will be subject to the supervision of the office of the Public Guardian and may have to make reports and be visited by a ‘special visitor’  (s. 59(1)).  The Public Guardian may also receive complaints about the way an assistant/co-decision maker is performing his or her functions and act on these complaints, including making an application to the High Court (although it is not exactly clear from the Bill  what the nature of this application will be- presumably it is to remove the person from the role).  It is clear though that formal oversight is going to be part of the process and carers are going to be the subject of this.  While, clearly, oversight is needed, a careful balance has to be struck between effective and appropriate protection of vulnerable people and ensuring that carers’ already difficult roles are not made unnecessarily more difficult.  It would also help to have some kind of support for carers in carrying out their legal role – the potential, for example, to involve an advocate where the legal task to be performed gets too complex or difficult.   Unfortunately, as currently presented, there is very little indication of support mechanisms for carers/family members in the Bill.

A second important provision from a carer’s perspective is s.53 which allows for a ‘informal decision-maker’ to make decisions in respect of ‘personal welfare’  (including healthcare and treatment).  Again this is most likely to be a carer.  As with s.5 of the Mental Capacity Act 2005, an informal decision-maker does not incur legal liability in respect o the decision which s/he would not have incurred if the person had capacity to consent and if s/he had consented to the decision.  This however is provided that the informal decision maker acts in accordance with the provisions of the Act – although no better indication than this is given. This is a dense and complex piece of legislation and this kind of imprecision is hardly helpful for carers operating on the ground.  The matter may of course be addressed in guidance and/or a Code of Practice – but as presently presented, a great deal more clarity is needed.

This is an important and very welcome Bill –  it is trying to achieve a difficult task – made all the more challenging by the context of austerity in which the legislation is going to be introduced.   The kinds of advocacy/educative frameworks which need to underpin this kind of legislation are unlikely to be funded in the near future.  Bearing this in mind, though, it is still important to engage with the framework presented to ensure that it serves its purpose in the best way achievable and this includes recognising the perspectives of carers.

‘The interface between care politics and corruption’ by Renu Addlakha

A most shocking event has taken place in the Indian state of Bihar involving the state run midday school meal programme resulting in the death of 23 children who had consumed insecticide laced rice and curry (http://news.in.msn.com/national/government-to-probe-mid-day-meal-scheme-after-23-children-die), The Midday Meal Scheme is the world’s largest school feeding programme involving 120 million children in India. The programme is run on a public-private partnership with NGOs and local contractors and the scheme involves giving hot nutritious freshly cooked food to children. It is envisaged as a means of reducing malnutrition and increasing school retention of children coming from poor households, particularly in rural areas.

In the present case the food had been cooked on the school premises and preliminary investigations suggest unintentional poisoning. The oil in which the food was cooked had been put in an empty pesticide container and the two substances had got mixed. This oil had then been used for cooking the meal. The food was prepared in the house of one of the teachers whose husband was grocer. So conspiracy theories are also rife.

From a care perspective, this case raises several issue to my mind.Firstly, how can such carelessness take place and what does it tell us about the attitude of those managing the programme? What does this tell us about the contemporary state as it moves from a paradigm of social welfare to neo-liberalism wherein it sub-contracts core care functions to private stakeholders? What is the value being placed on the lives of young children in such a context? How is that the rage which such an event should have generated has turned more into a storm in a teacup? What does this event tell us about the interface between care politics and corruption?

I would love hear how others view this event from a care perspective.

Renu Addlakha
Professor
Centre for Women’s Development Studies
New Delhi, India.

Assessing the needs of carers

Updated 21st August with link to project findings.

National Carers Week invited everyone to consider the impact of being a carer on a person’s life. Carers were also encouraged to make sure they access the support they need, both practical and emotional.

Carers’ own needs can easily be hidden. Social care policy and practice emphasise the rights of disabled and older people to have choice and control over their own personalised support arrangements, usually in the form of a personal budget. Family members who provide ‘regular’ and ‘substantial’ support also have rights to separate assessments of their own needs and support to meet these needs.

These policies have, however, developed separately from one another, despite the interdependencies of service users and carers. There is therefore a danger that, in focusing on the needs and rights of service users, those of carers can be overlooked.

Our research, carried out at the Social Policy Research Unit, University of York, examined how social care practice balances the interests of older and disabled people with those of family carers. We focused on disabled and older people with cognitive or communication impairments and their carers, as the latter were particularly likely to be heavily involved in their assessments and support planning. The study involved

  • A survey of councils in two English regions
  • Interviews with senior personalisation and carer lead officers, and focus groups with front line practitioners, in three councils
  • Interviews with pairs of service users and their carers

We found that both carers and service users were happy for carers to be involved in service user assessments. Carers helped people explain their needs to social workers, and interpreted what professionals said to service users. Disabled and older people felt supported and reassured by having someone present who knew them and their needs, even if the carer remained quiet. Professionals also appreciated having carers involved.

Professionals frequently talked to service users and carers together, at the same time. This was thought of as a ‘joint’ or ‘holistic’ assessment which provided an opportunity to get a picture of the family situation as a whole – although it did not allow carers to discuss their own situation in private or consider the emotional impact of care-giving.

Most carers remembered being asked about their ‘willingness’ and ‘ability’ to continue caring at this time, but many could not remember being asked about their own needs. The Carers (Equal Opportunities) Act 2004 says carers should be offered separate assessments of their own and the opportunity to talk about their own needs that extend beyond their care-giving roles to include, for example, leisure activities and employment.

While many carers in the study had been offered a separate carers’ assessment, few had taken this offer up unless it was necessary to access a specific service. Some felt a separate assessment was pointless, as it would not lead to extra support, while others felt they had already talked enough about themselves during the service user’s assessment. Some front-line practitioners could also not see the point of a separate carer assessment.

However, without a separate carer assessment, the only time carers talk about their own needs may be during service users’ assessments. If the only questions addressed to carers in these assessments are about the practical care tasks they carry out and their ‘willingness’ and ‘ability’ to continue performing these, there is a danger of carers’ wider needs being overlooked or ignored. This is far from the intentions of the 2004 Act, which aimed to increase the social inclusion of carers.

As skilled professionals, many social workers will ask wider questions and delve deeper into carers’ lives and their support needs in the course of service user assessments, but where are these needs recorded? Some practitioners expressed concern about the lack of space on service user assessment forms to record carers’ wider needs and wishes.

This study suggests that

  • The value of separate carer assessments needs to be much clearer, both to practitioners and to carers themselves.
  • Where carers do not take up the offer  of a separate assessment, service user assessments should provide space for detailed discussion and full documentation of carers’ own support needs
  • When separate carer assessments are done, they need to be routinely linked to service user assessments.  Practitioners also need to be clear about the processes that facilitate this.

A summary of the findings of our study is now available on the project website. Please contact us if you have questions about the research.

Dr Jenni Brooks (jenni.brooks@york.ac.uk), Dr Wendy Mitchell, Professor Caroline Glendinning

Social Policy Research Unit, University of York

The research was funded by the NIHR School for Social Care Research. The views expressed here are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health, NIHR or NHS.

House of Lords Select Committee on the Mental Capacity Act 2005

The House of Lords has established a Select Committee on the Mental Capacity Act 2005 (MCA). The terms of reference for the committee are to “consider and report on the Mental Capacity Act 2005”.The Committee has been taking oral evidence,  and has also published a call for written evidence submissions. For more details on the committee, and the questions that are being asked in the call, see the Parliament website. The deadline for responses is 2 September 2013, during our next ReValuing Care workshop ‘Caring about Social Interconnection‘ in Adelaide. As such, we will aim to have a final version of our response completed before the end of August.

As an interdisciplinary and multi-sector network of academics, activists, carers and third sector professionals with interests in care, the ReValuing Care Network is well placed to put together a response to this call for evidence. I will coordinate a response to the questions asked by the committee, and have set up a few discussions on the private network members forum to facilitate this. All network members are warmly invited to contribute to the response, and any other interested parties are warmly invited to join the network. To join us, simply fill in the form.

The Call for Evidence covers all aspects of the operation of the MCA, including the overall context, implementation, decision-making, Deprivation of Liberty Safeguards (DoLS), the Court of Protection and the Office of the Public Guardian, regulation and the interface with other legislative provisions, as well as devolution and international issues, including compliance with the UN Convention on the Rights of People with Disabilities.

Please do get involved and join in the discussions on the forum. Between the network members, we have an unrivalled breadth of knowledge and experience of the regulation of care. By responding to this call for evidence we can attempt to have an impact on the lives of those giving and receiving care who are affected by the MCA 2005.

Rosie Harding, July 2013