“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.

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

Caring about mental health inequalities, by Professor Elizabeth Peel

Previous research indicates that, compared to heterosexual people, LGBT young people are more likely to attempt suicide, lesbian and bisexual women are more likely to have drinking problems, and gay and bisexual men are more likely to have body image disorders. Therefore the Risk and Resilience Explored (RaRE) study, funded by the Big Lottery (2010-2015), explores these mental health inequalities in LGBT people in England. The project is led by PACE Health, a London-based charity, in partnership with Prof Elizabeth Peel (University of Worcester), Prof Ian Rivers (Brunel University) and Allan Tyler (London South Bank University) and aims to address the following questions:

  • Which LGBT people have these problems?
  • What are the risk/predictive factors?
  • What are the resilience/protective factors?
  • How do these vary between the study groups and between the study groups and their heterosexual counterparts?

The team has just launched a large-scale Health and Wellbeing survey that is open to anyone over 18 living in England. People of all sexualities whether or not they have experienced mental health problems can participate in the research via https://www.surveymonkey.com/s/a_RaREStudy This offers an opportunity for those who care about understanding health inequalities to share their experiences and perspectives. For more information about the RaRE study contact the project coordinator Nuno Nodin: nuno.nodin@pacehealth.org.uk .

 

Elizabeth Peel

Professor of Psychology & Social Change

Institute of Health and Society

The University of Worcester

Henwick Grove, Worcester, WR2 1AG

Email: e.peel@worc.ac.uk

 

Care as a Value and Valuing Care, by Professor Marian Barnes

The Observer on 8th June published a story demonstrating the impact of recent Government changes to housing benefits. As a result of being forced to move from Westminster to Brent because of benefit changes, Hanane Toumi and her young children aged 6 and 3 have to travel 5 miles each morning to get to school and nursery, before Hanane then travels to another part of London to work as a cleaner.  It has not been possible to get a school place near their new accommodation and nursery places are more expensive. Local government officers in Westminster and Brent have acknowledged that the situation is ‘not ideal’, but do not accept that the exhaustion and emotional impact resulting from this are a reason for reviewing the family’s situation.

Benefit changes introduced by the Coalition Government in the UK have been roundly condemned. But Ed Miliband’s announcement that an incoming Labour government would put a cap on the overall cost of benefits doesn’t inspire hope that too much would change.  What does this say about the value attached to ‘care’ by politicians and local officials? The Observer story was framed in relation to evidence that, rather than costing less, the financial cost to the state of homelessness is going up because of the costs of funding temporary accommodation for low income families in wealthy areas.  But implied within the story is the lack of care shown by the state about the everyday lives of women such as Hanane and her children. As a result of government decisions at national and local level Hanane’s capacity to care for her children and herself is severely compromised. Her daughter falls asleep at school and her emotional welfare is suffering.

Care ethicist Eva Kittay has named ‘epistemic responsibility’ and ‘epistemic modesty’ as fundamental principles for the ethical conduct of philosophy and I have suggested we should similarly apply these principles to the making of social policies. If policy makers neither know about or understand the circumstances and consequences of the policies they make, nor care about the lives of those impacted by these policies, then policy will not only be ineffective but unethical. Joan Tronto named ‘competence’ as one dimension of care and the experiential knowledge of those who live in poverty, and experience at first hand the impact of government policy, is essential to shaping  policies that are attentive to people’s everyday lives. But the Coalition government has proved itself to be unconcerned about making policy on the basis of ‘evidence’ when it comes to benefit changes. And the Labour leadership appears reluctant to articulate a value based approach to welfare.

Unless politicians and public officials recognise that they should care, that caring involves knowing what you’re talking about, and that care is a value that should guide social policy, experiences such as that of Hanane Toumi and her children will simply not be seen to matter.  Naming care as a value as well as valuing care are equally essential.

12/6/13

Marian  Barnes

Professor of Social Policy
School of Applied Social Science
University of Brighton
Mayfield House
Falmer, Brighton BN1 9PH

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

Kittay, E. F. (2010). The Personal is Philosophical is Political: A Philosopher and Mother of a Cognitively Disabled Person Sends Notes from the Battlefield. Cognitive Disability and its Challenge to Moral Philosophy. E. F. Kittay and L. Carlson. Chichester, Wiley-Blackwell: 393-413.

Tronto, J. (1993). Moral Boundaries. A Political Argument for an Ethic of Care. London and New York, Routledge.

What price care?

There have been a couple of interesting articles in the UK this week about paying and motivating care staff. An article in Community Care this week highlighted that many UK care providers are not paying employees properly:

http://www.communitycare.co.uk/articles/31/05/2013/119218/investigation-into-90-large-care-providers-finds-many-are-flouting-pay-laws.htm

This of course goes to the heart of valuing care and carers, notions of care as a commodity, and considerations about under-funded care services and underpaid staff.

Another article in The Guardian this week, suggested employee ownership of care organisations is the way forward:

http://socialenterprise.guardian.co.uk/social-enterprise-network/2013/may/31/employee-ownership-social-care

The staff, some of whom only work a day a week all have a personal financial ownership of the care organisation they work for. It’s an interesting idea. Is social enterprise really the solution to care’s woes? Or is it just another form of marketisation of care and is something more radical required?

Antipsychotic medications in dementia – time to think again about regulation?

Along with my colleague, Elizabeth Peel, I was invited to write a post for the OUP Blog highlighting the arguments in a paper of ours that was recently published in the Medical Law Review. The blog post draws out several of the arguments from our paper (which is open access for a short period: download it now!), and yet no-one seems to have taken much notice. When we were invited to write for the blog, we were told that the blog has 8,000 subscribers and has over 40,000 visits every month. So why would a contribution on this important issue not make much of a splash?
There could be all sorts of reasons – perhaps it’s not quite on the zeitgeist of where the media focus is on caring for people living with dementia; perhaps the argument in the paper is too ‘legal’ and so not quite amenable to media interest in the blogosphere; perhaps the recently reported reduction in antipsychotic prescribing makes everyone think this is a non-issue; or perhaps until there are other ways to ‘treat’ ‘challenging behaviour’ in dementia, nobody is interested in the limitations of the current methods. It’s hard to tell. Certainly any and all of these might be contributory factors. But I think this is an important issue, and one that it’s worth shouting about, so I’m going to try again here!
In the article ‘He was like a Zombie’: Off-label prescription of antipsychotic drugs in dementia’, we argue that most antipsychotic drugs:

  • are not tested for use in elderly people with dementia;
  • are not licensed for use in elderly people with dementia;
  • have serious side effects including stroke and death when prescribed to elderly people with dementia
  • should be better regulated

We also highlight that in our empirical research, carers of people with dementia report a range of other harms associated with the use of this class of drugs to treat behavioural symptoms in the people they care for. In the paper, we explore the potential for legal redress for these harms and find that there is little or no chance of legal claims being successful.
As we think again about how people who can’t stand up for themselves are vulnerable to abuse at the hands of the professionals responsible for their care (for example the Winterbourne View scandal), we need to think again about all sides of the interface between care, law and regulation. The current regulatory frameworks offer little comfort to those who are harmed by ‘care’ that is not criminally abusive. So as well as thinking again about how we regulate social care, I think the antipsychotics issue demonstrates why we might also need to think again about health care and those who can’t consent to treatment. Without going into the intricacies of medical negligence, people with dementia harmed by the prescription of antipsychotic drugs to treat behavioural symptoms currently have no chance of compensation or access to justice even though it is widely known that they can be harmful. I think it is time this changed. What do you think?

Who should take responsibility for care?

A nw scheme to train a million people as ‘dementia friends’ has been announced by the Prime Minister, David Cameron, as part of the next stage of his Prime Minister’s challenge on Dementia. The scheme will be run by the Alzheimer’s Society, who are inviting interested individuals to register their interest on the dementia friends website.

Dementia Friends Logo

www.dementiafriends.org.uk

Dementia friends will be trained to help people with dementia feel understood and included in their community. The aim of the scheme is to “make everyday life better for people with dementia by changing the way the nation thinks, talks and acts.” £2.4 million has been put forward from the Social Fund and the Department of Health to fund this initiative.

There is much to commend about this scheme. If successful, it could not only help to raise awareness of the challenges faced by people living with dementia, but could also lead to positive steps in the direction of creating ‘dementia-friendly’ communities. Making local communities more dementia friendly could help people living with dementia to live more independently for longer. This scheme also helps to recognise the importance of people other than immediate family and friends in supporting and caring for a person living with dementia. All too often, caring for a person with dementia can be an isolating experience, where familial carers slowly lose their own support networks because others don’t understand the challenges that dementia presents.

It seems to me that there is also an important ideological shift associated with making caring for people living with dementia a priority for communities, rather than individuals and private families. In an ideal world, moving towards collective responsibility for care might help to off-set some of the individual costs of caring, provided the scheme offers real help and support to people living with dementia. On the other hand, we must also be alert to the possibilities that rather than increasing (state-funded) support for people living with dementia and those who care for them, initiatives that push the emphasis onto communities to support each other are also tied to the aim of reducing the financial responsibility of the state for these sorts of services.

All too often in the dementia care sector, there are excellent services for some, and limited or no services available to others depending on where they live. In my recent research into dementia carer’s experiences (see www.dementiaproject.net), many familial carers found it extremely difficult  to navigate the complex ‘maze’ of services and service providers. Let’s hope that this is a project that, if successful, will continue to be financially supported through public funds to ensure parity of access, rather than relying on charitable support that can be geographically variable.