Posts Tagged 'caring'

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.

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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 carehome.co.uk, 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 homecare.co.uk, 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.

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The views and opinions expressed on this blog site are solely those of the original blog post authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

Election focus: Avoiding Another Failed NHS Experiment

In the next post in our Election Focus series, David Hunter, author of The health debate, explains that the election must not become an excuse for shelving much needed health system transformation.

David Hunter

“A possible unwanted side effect of this most avoidable of unnecessary general elections, and the accompanying purdah into which everyone has slumped, is the impact on the NHS reforms initiated by the NHS Five Year Forward View published in 2014 and its update in the Next Steps delivery plan published last month.

One can only hope the NHS Chief Executive, Simon Stevens, is correct when he asserts that ‘there is no version of reality’ in which his changes will not be needed and actively pursued. Even if he is proved right there could still be disruption if a new health secretary replaces the current post-holder, Jeremy Hunt.

Or if the all-consuming Brexit negotiations divert the government’s focus and slow down the pace of change as seems likely. Or if a new administration decides to replace Stevens. As the chief architect and champion of the changes, he is critical to their success, especially at such a delicate stage in their evolution and before they have been fully embedded.

New Care Models and Sustainability and Transformation Plans

The election comes at a pivotal time in regard to progress with the New Care Models (NCM) nested in the Vanguards initiative and the evolving Sustainability and Transformation Plans (or Programmes if you prefer) (STPs) agenda.

“…opens up the prospect of further stalemate and a failure once again to get to grips with long overdue changes to reshape the NHS for the new challenges it faces.”

In the case of STPs, Labour has stepped back from its rather foolish pledge announced in the leaked manifesto to impose an immediate moratorium on them if elected. But while the final manifesto now states that Labour will merely ‘halt and review’ STPs, the move still heralds a return to heavy-handed ministerial meddling from the centre.

As a way of running the NHS, it has rarely if ever been desirable or worked. Moreover, it opens up the prospect of further stalemate and risks failing once again to get to grips with long overdue changes to reshape the NHS for the urgent and complex challenges it faces.

What’s needed?

For the changes to succeed requires sensible resourcing and sustained commitment over a reasonable time period, both of which are already fragile under the current government. If re-elected with a larger majority it is unlikely much will change which could leave the changes in a precarious state, especially when coupled with the desperate pressures the NHS is already under both in terms of financing and staff recruitment.

So, while perhaps not putting the changes at risk in the way Labour’s proposals seem destined to do, a Conservative government with a fresh mandate need not axiomatically be good news for the NHS.

If the political outlook for the NHS changes presently being implemented looks potentially bleak or risky whoever wins, it will be incumbent on senior managers and clinicians, perhaps with the support of the Royal Colleges and others, including local government, to lead and drive the changes.

An opportunity

The Vanguards and STPs represent a chance of a lifetime opportunity to transform the NHS as it approaches its 70th birthday in July 2018. Too often in the past resistance to change has won out and the result has been an NHS which in many respects has become ossified and no longer fit for purpose given the changes in demography, lifestyles and the evidence of growing inequalities.

“Too often in the past resistance to change has won out.”

Successive inquiries and critiques of the NHS have pointed to the repeated failure to take prevention and public health seriously, to integrate health and social care, and to rebalance the health system away from costly, acute hospital care. The Vanguards initiative and STPs are confronting head-on all these deep-seated systemic problems that have persisted in the NHS for decades.

Drawing conclusions from the NCMs is premature and inconclusive. Generalising from very complex and different models and contexts is a hazardous business. But, putting these health warnings to one side, the early evidence emerging shows a passion, enthusiasm and high level of commitment to make the changes work. They are also felt to be the right way to go in terms of patient care.

Once the evidence from the local evaluations starts to appear later this year, there will almost certainly be a mix of likely successes and failures although it will take longer to assess how far the changes have actually impacted on health outcomes. It is also the case that, as the Public Accounts Committee concluded recently, STPs are a mixed bag and of variable quality. In most places, engaging local government and the public should have assumed a much higher priority at an earlier stage.

But when all is said and done, the unprecedented transformation journey on which the NHS has embarked has given permission to local areas to chart their own destinies within a national framework providing support and development know-how. It is not perfect and tendencies for old-style, command-and control behaviour to surface have to be resisted. Nor is the overall financial climate helpful or sustainable although, if one is honest, resource pressures have been an important stimulus for change.

If the changes underway can be maintained post-election and the NHS becomes a genuine health service rather than a sickness one, which it has been since its inception, then that must be the goal of all those who want the NHS to survive and should be embraced enthusiastically.

Warts and all, we should not squander this opportunity to transform the NHS so it can meet the 21st century challenges confronting it. Surely that has to be a 70th birthday present to remember.

 

The health debate by David J. Hunter is currently available with 50% discount on the Policy Press website.  Order here for just £7.49.

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The views and opinions expressed on this blog site are solely those of the original blog post authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

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 http://www.carersweek.org/.

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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