Posts Tagged 'carers'

Variations and Innovations in Care Services: Reflections on the Debates and Issues papers in the new themed issue of the International Journal of Care and Caring

Alisoun Milne

Alisoun Milne

By Alisoun Milne, Debates and Issues Editor, International Journal of Care and Caring

Issue 2, Volume 2 of the International Journal of Care and Caring is the journal’s first themed issue. It is edited by Karen Christensen and Yueh-Ching Chou and is entitled ‘Variations and Innovations in Care and Care Work: Critical Perspectives’.

The articles in this issue explore the relationships between formal care services and ‘informal’ care work and how they are being affected by change in different parts of the world. The Debates and Issues section is written by committed practitioners who want to improve the lives of service users and carers. They offer a lens on how two different countries have engaged with two contemporary challenges: ensuring cost effective user driven support for people with intellectual disabilities in Norway and how to offer creative accessible support to carers.

Two papers from Norwegian practitioners ‘User-controlled personal assistance ‐ the case of persons with intellectual disabilities’ and ‘From institutionalisation via good intentions ‐ and back again?’ explore innovations in the care and support of people with intellectual disabilities, specifically user controlled personal assistance and community based alternatives to long stay hospital care. The third paper, ‘Making a world of difference for carers: the Pathways for Carers project’ introduces us to an exciting new model of carer support – a ‘Pathways for Carers walks’ project – based in Victoria, Australia.

“discusses the tensions that exists between policy goals and offering a service that offers ‘value for money’ (sound familiar?).”

The two Norwegian authors discuss the tensions that exist between policy goals such as personalised care and the operational realities of offering a service that offers ‘value for money’ in a time of reduced funding for welfare services (sound familiar?). Balancing the rights of people with intellectual disabilities to independent living and personalised decision making with the risk of them being expected to accept a narrow reductionist service is also explored. The second paper raises the question about whether group living community-based alternatives to long stay hospital care are genuinely less institutionalised. Cuts to staffing and reduced funding for support of people with intellectual disabilities have resulted in the introduction, by stealth, of institutionalised elements to the caring regime e.g. reduced access to community facilities. The advantages and disadvantages of ‘group living’ are also discussed raising a second question – whether this model suits everyone. Accommodating more challenging needs whilst ensuring that all users are able to live an ‘ordinary life’ is a specific issue.

The ‘Pathways for Carers walks’ project brings to the fore the importance of developing services that are in tune with the local needs of carers and utilise community intelligence and resources. The ‘walkers’ that lead the service passionately believe in the power of carers’ sharing experiences and the therapeutic and physical benefit of walking in lovely open space whilst learning about the variety of support services available to them. Part way along, there is a Carers Seat dedicated to carers’ contribution to community and family life in the region; the seat is enjoyed by many carers participating in the walks.

“offers insights into the value, benefit and challenges of delivering three creative models in two different parts of the world”

The papers offer us insights into the value, benefit and challenges of delivering three creative models in two different parts of the world, brought to life through examples of users and carers experiences. The authors helpfully reflect of how policy ‘meets’ practice and the pivotal role that families and carers play in supporting and advocating for their relatives and the importance of recognising, advising and supporting carers themselves.

International journal of care and caring [FC] - smallThe Debates and Issues section is free to access in all issues of the International Journal of Care and Caring

Read the articles for free online:

User-controlled personal assistance ‐ the case of persons with intellectual disabilities

From institutionalisation via good intentions ‐ and back again?

Making a world of difference for carers: the Pathways for Carers project

Explore the themed issue:

Variations and Innovations in Care and Care Work: Critical Perspectives

Write for the Debates and Issues section:

The Debates and Issues section of the International Journal of Care and Caring attracts articles (up to 2500 words long) from a number of different stakeholders in the fields of care and caring on a range of contemporaneous issues of interest to an international readership. Authors are drawn from the third sector, the fields of policy and/or practice as well as students and academics. If you are interested in writing a paper for the section please contact and read our guidance to authors.


Carers Rights Day: International Perspectives

By Jo Moriarty, Social Media Editor, International Journal of Care and Caring

Every year Carers UK holds Carers Rights Day to help carers find out about their rights and how to access help and support. There is overwhelming evidence that many family carers often care for many years without knowing what support they are entitled to. However, carers’ rights need to be embedded within wider health, social, and employment policies, as two articles published in the journal this year reveal.

This year’s Carers Rights Day in the UK comes shortly after publication of the third issue of the International Journal of Care and Caring for 2017.

As the journal’s first year of publication draws to an end, it seems a good opportunity to think about carers’ rights in an international context by highlighting two articles that have appeared this year.

1. Collateral damage: Australian carers’ services caught between aged care and disability care reforms by Ara Cresswell FREE DOWNLOAD

The Australian Bureau of Statistics has shown that almost a third of Australian primary carers provide more than 40 hours of care per week. One third also live with some form of disability themselves. Almost three quarters rely on welfare benefits as their main source of income, meaning that their incomes are much lower than those who do not care.

Services for carers in Australia built up in a fragmented way and were often piecemeal, explains Ara Cresswell of Carers Australia. Set against this, flexible funding meant that support could be targeted on different types of carer and carers could access services as consumers in their own right. This changed in 2008 with the transfer of all funding for aged care to the national government, including grants such as the National Respite for Carers Program (NRCP). Carers Australia argues that the changes that have flowed from this have led to many carers receiving reduced support because help for them is so strongly linked to the entitlements of the person for whom they care.

A second factor was the introduction of the National Disability Insurance Scheme (NDIS) in 2012. It had been hoped that personal budgets for people with disabilities would help many carers return to paid employment. However, this has not proved to be the case, especially as these funds can only be used by carers themselves for training relating to caring and not to provide replacement care while they are at work.

Taken together, suggests Cresswell, an unintended consequence of these two reforms is that services for carers are ‘collateral damage, caught between aged care and disability care policies’.

2. ‘Enabling carers to care’: making the case for a European Union action plan on carers’ by Christine Marking FREE DOWNLOAD

Turning to Europe, Christine Marking, also highlights the problems when policies do not specifically consider the position of carers. She highlights the variability in support for carers across the European Union (EU). While recognising that most of the decisions that most affect carers occur at a national level, she argues that there is a place for EU wide legislation, such as the right to carers leave or help with training so carers can enter or re-enter the labour market. Another of her ideas is for a European Year of Carers, along the lines of previous years such as the European Year for Active Ageing in 2012 or the 2018 Year for Cultural Heritage. Ideas such as these could, Marking suggests, help promote a more integrated approach to support for carers and enable member states to learn from good practice in different countries. She concludes:

‘If carers are expected to continue providing care – and they are – meeting their needs should be an embedded dimension of health and social policy development.’

These are just two of the articles in the International Journal of Care and Caring (IJCC), which is a multidisciplinary journal designed to advance scholarship and debate about all forms of care and caring among researchers, policymakers, practitioners, family carers, and all those concerned with carers’ rights. The vision for the journal is set out here.

The IJCC welcomes research articles, debates and issues papers and book reviews which can be submitted here. Debates and Issues papers are free to access and every month a different research paper is available to read on temporary full text access.

You can recommend the journal to your librarian or take out a personal subscription here.

Read the latest issue of the International Journal of Care and Caring.

For all the latest Journal news and free articles:

Sign up to the International Journal of Care and Caring newsletter
•Follow @IJCCjournal on Twitter.

The articles featured in this blog post are free to read in the ‘Debates and Issues’ section of IJCC Vol.1 No.2

TripAdvisor helps us choose hotels and restaurants – so why not where we end our days?

Originally published by The Conversation on August 1st 2017. 

Tony Walter

My 91-year-old mother was deeply unhappy at the geriatric hospital in which she found herself after breaking her ankle.

But we knew little of the alternatives. Official inspection ratings offer impersonal information. So how were we, her children, supposed to gauge the quality of other establishments offering care?

Our saviour turned out to be Alison – my mother’s hairdresser. As a specialist in older, housebound clients, she had continued to do her customers’ hair as they moved to various hospitals or care homes.

Alison gave us the names of three places nearby that our mother might prefer, and we arranged her transfer within 36 hours. It was a move which transformed the quality of her last few months of life.

Unlike formal inspectors, Alison was an unthreatening, secret observer of each of the institutions she visited. She proved to be a knowledgeable and reliable guide. Without her, my mother’s life could have ended very differently.

The trouble is, not every family is lucky enough to know an Alison.

In the UK, people are expected to make their own choices about their own care in the final months and years of life. But how can people become well informed about different care providers, especially when a crisis forces decisions to be made at short notice? Alison revealed the importance of informal contacts and social networks in allowing individuals and families to make good choices.

How could her role be made available to all families seeking similar information? Care settings for those nearing the end of life are, in terms of inspection, a bit like restaurants. Technical medical and nursing procedures, like a restaurant’s kitchen, need inspecting by technical inspectors. But most of the care provided at the end of a person’s life is not of the technical kind. It involves hard to measure factors like respect, a sense of belonging, and relationships with staff. It is in many ways like assessing a restaurant’s ambience. In the hospitality trade, this is something best considered by mystery customers who collectively author good food guides, or by informal online ratings like on TripAdvisor.

Such assessments rightly abandon the myth of objectivity embedded in formal inspections. Potential consumers perusing TripAdvisor ratings understand them as subjective experiences to be taken on balance.

So collective, honestly subjective, online ratings should be available for families to make informed choices about different care settings. For well-being over the course of life, we need to be able to read about customer experiences of health and care agencies just as much as we need to read about experiences of restaurants, hotels and holidays.

A great example of what is needed is, which gathers and publishes reviews of care homes, along with other information provided by the home. Many of the care homes listed, however, have no reviews. Care at home is reviewed by the online database, although the vast majority of organisations that look after people in their own homes have no reviews.

Those two websites are funded by industry subscriptions. Proposed reviews are authenticated and vetted before publication, and reviewers are advised not to publish complaints but send them direct to the agency. These safeguards should eradicate vexatious reviews, although they may also present an unrealistically positive overall view of user experience. The sites are, however, a step in the right direction.

Of course, TripAdvisor-style ratings for the “last journey” tend to come not from the actual service-user or patient. Most reviews are from family and friends, which could be an issue. Complex family dynamics – such as guilt at putting parents into care, or anxiety that care costs are eating up the inheritance – can mean families are rarely the baggage-free observers that Alison was.

Reviewing the situation

Of more concern is that even the most loving, attentive and observant family member may know little about the person’s experiences at the hands of their paid carers. This might only be achieved by CCTV cameras, but do we really want care homes, hospital wards and (in the case of home care) even the person’s own home to become zones of electronic surveillance?

No way of monitoring or collecting information will be perfect. And we should acknowledge that the trajectory of frail elderly dying is always uncertain. No one can predict how they will feel as bodies and minds fail, so all choices will entail a degree of guesswork.

Rigorous formal inspection – and public enquiries when things go dramatically wrong – are of course essential. But if people nearing the end of life (or their families) are to adopt the prescribed role of informed consumer, comprehensive collations of user experiences are vital.

End of life care is more important than booking a restaurant or the next holiday – so information needs to be just as good, or better.

What death means now by Tony Walter is available with 20% discount on the Policy Press website.  Order here for just £7.99.

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9 FREE journal articles for #CarersWeek

8-14th June 2015 is Carer’s Week in the UK. This annual campaign aims to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK. You can read more about Carer’s Week at

To show our support for this campaign we are making a collection of our journal articles free for the week. Continue reading ‘9 FREE journal articles for #CarersWeek’

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