Archive for the 'Social Care' Category

Shared Lives: a new health and care system

Alex

Alex Fox

Alex Fox is the author of A new health and care system – out today and launching at Nesta this evening.

Here he unpicks the dehumanising tendencies of our public services to introduce a new health care model where those living with long-term conditions can achieve wellbeing in a system that looks at people’s strengths and capabilities, and their potential, not just their needs.

“The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. It often does that astonishingly well. But now 15 million of us (most of us at some point during our lives) live with long-term conditions; three million with multiple long-term conditions. We cannot be healed or fixed, we can only live well, drawing on state support relatively little, or live badly, drawing on state support heavily and falling repeatedly into crisis. That long term, increasing reliance on intensive support services is not only likely to feel miserable to us as individuals and families, it drives long term financial meltdown which will bankrupt our service economies, even if they survive the current period of austerity.

“…we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing.”

So we need a different relationship between people with long term conditions, their families and the services they turn to for help. But health and care leaders continue to talk and plan as if the health and care system was fixable by streamlining what we currently do, integrating various kinds of organisation, or making better use of tech. This is because, whether we use public services, work in them, or lead them, we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing. We do not recognise that people who live for years or decades can become more expert in what works for their wellbeing than many of the professionals who necessarily dip in and out of their lives. Family carers provide more care than the state, but even they are not recognised as vital members of a wider caring team, who might need knowledge, training, equipment and emergency back up just as much as their paid colleagues.

“…fit support around a good life instead of asking people to fit their lives around a good service.”

To unpick this, we need to trace the dehumanising tendencies of our public services from their first contact with people who may need their support and their families, through all of their interactions, to the ways in which they ultimately reject, or in some cases, cling on to, their inmates. With demand rising, services are putting more resources into assessment processes designed to keep away the less needy, but those processes are themselves a drain on resources, and they ensure that those who meet needs thresholds are least able to identify and build on their own capacity to self-care, and have already had their confidence and independence demeaned and undermined by bureaucracy.

The alternative is to take an ‘asset-based’ approach to every long-term support service offered: looking for people’s strengths and capabilities, and their potential, not just their needs. For nearly everyone, these ‘assets’ are partly their relationships with friends and families, so every support service must be delivered in ways which fit round and back up those informal networks, minimising disruption to them.

There is already at least one nationally scaled support model which does this: Shared Lives, now used by 14,000 people in almost every UK area.

Edward, Stephen and Christina’s story

edward-2

Edward is 66 years old and lives with Shared Lives carers Stephen and Christina. Edward has a learning disability and has been blind since childhood, and when living with traditional methods of support his independence suffered. He didn’t have his own space and was restricted from carrying out many of the tasks and routines of daily life, as well as access to broader life experiences.

Stephen had had contact with Edward through his previous work as a social worker. He perceived that Edward had a lot of potential and believed he could do much more for himself. So when Stephen became a Shared Lives carer and developed his own personal care skills, he and Christina opened their home to Edward and made it their mission to develop his confidence.

The transformation has been profound, with Edward describing his increased independence: “I’ve got my own room and all the things I need. It’s been brilliant. I haven’t looked back since I’ve been with Stephen and Christine.”

Edward has gone from a situation in which he hardly ever experienced leisure activities or life outside home, to having an impressive list of holidays and trips under his belt. He has been to Las Vegas, and taken a helicopter ride over the Grand Canyon. Closer to home, with a bit of support from his Shared Lives carers, he has been to a Formula One Race at Silverstone: “I could feel the cars!” said Edward, describing the sensation of picking up the vibrations of the revving of engines through his feet.

Stephen has encouraged Edward’s enjoyment of the atmosphere at sporting events – and they go to the rugby almost every week. Through Shared Lives, Edward has been able to explore his pre-exiting interests in cars and sports to the full.

Shared Lives demonstrates that it is possible to combine people’s own capacity, with the strengths of positive family and community life, and the back-up and resources of a regulated care service. No one approach can be the magic bullet which will heal our ailing NHS, but Shared Lives offers lessons and challenges which could be taken up by any service: look for the person, not the condition; fit support around a good life instead of asking people to fit their lives around a good service; always connect.

A new health and care system [FC]A new health and care system, by Alex Fox is publishing on 28 February 2018 and is available with 20% discount on the Policy Press website. Order here for just £15.19.

Find out more about impact, influence and engagement at Policy Press here.

Policy Press newsletter subscribers receive a 35% discount – sign up here.

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.

Repealing the 8th: how new legislation on abortion should be designed

Fiona de Londras

Fiona de Londras

Mairead Enright

Mairead Enright

Fiona de Londras and Mairead Enright – authors of ‘Repealing the 8th: Reforming Irish abortion law‘ – respond to the announcement of the Irish Cabinet of its intention to hold a referendum to repeal Article 40.3.3 in May 2018. The book, now publishing on Thursday this week, looks beyond the referendum to what might come next, presenting detailed proposals for new legislation.

Chapter 4 from the book – Accessing abortion care: principles for legislative design – is now available to download free on our website. 

In 1983 the Irish Constitution was amended by the insertion of Article 40.3.3, now known as ‘the 8th Amendment’. This provides that “the State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.

At first glance, the 8th Amendment may seem innocuous or merely aspirational. However, over time, this provision has led to a near-absolute prohibition on abortion in Irish law and serious infringement of pregnant people’s rights. Under the current law, abortion is only lawfully available in Ireland when a woman will almost certainly die without it, and even then multiple doctors usually have to agree that this is the case.

“More than three decades of activism have come together in a large, vocal, visible and highly effective campaign for political and legal reform.”

Now, though, there are signs of change. More than three decades of activism have come together in a large, vocal, visible and highly effective campaign for political and legal reform; for the removal of the 8th Amendment and introduction of a law that will enable women to exercise agency in pregnancy and ensure that, for those who want to avail of it, abortion care is available at home in Ireland.

On Monday, the Irish Cabinet announced its intention to hold a referendum to repeal Article 40.3.3 in May 2018. The People will be asked to delete this Article and to insert a provision that expressly says that provision may be made by law for the termination of pregnancy. The Taoiseach said that the referendum will present the People with a choice to enable the Irish parliament to legislate for abortion care at home, or to continue to export abortion to other jurisdictions and to put the lives of women in Ireland at risk.

The Cabinet will publish indicative legislation for a GP-led abortion service ‘on request’ up to 12 weeks, and more limited access to abortion in later pregnancy.

Hamill Aoife - 205kTravelled - Signs - London Irish Arc 2

After the referendum

In the book we look beyond the referendum, to what might come next once the 8th Amendment no longer absolves the Oireachtas of the responsibility to make law to provide for the needs of women in Ireland. We include detailed proposals for how new legislation on abortion might be designed, including draft legislation that gives effect to the proposals that appear to have received Cabinet support this week in a way that respects the rights of pregnant people in Ireland.

“…the rights of pregnant people can be developed in ways that truly respect and protect bodily integrity, privacy, and the right to be free from inhuman and degrading treatment.”

In doing this, we argue that repeal of the 8th Amendment would create opportunities for the progressive interpretation of the Constitution, so that the rights of pregnant people—for so long narrowed down to a bare right to life said to be equal in stature to that of an unborn foetus—can be developed in ways that truly respect and protect bodily integrity, privacy, and the right to be free from inhuman and degrading treatment. This, we argue, would compel the Irish state to provide for lawful abortion, but would allow it to pursue the socially valuable objective of preserving foetal life provided in doing so it respects the constitutional rights of pregnant people.

This can be done by introducing law that makes abortion available without restriction as to reason up to at least the twelfth week. After that such a law might make lawful abortion available on broadly drawn health grounds so that pregnant people can truly determine the course of their own reproductive lives, and so that victims of sexual violence or those who have received unexpected foetal diagnoses will be able to be supported through a decision to an end a pregnancy, rather than forced through a punitive ‘qualification’ processes. This is what we are calling for now that the Referendum has been announced.

Like the Citizens’ Assembly and Joint Oireachtas Committee on the 8th Amendment, we draw distinctions between the availability of abortion after 12 weeks and after 24 weeks, with later abortion (after 12 weeks) being truly exceptional in law, just as it is in life. Illustrating the feasibility of such an approach, we include in the book draft legislation that gives effect to this approach. This makes our book essential reading for anyone involved in the campaign.

Our objective in writing this book was threefold. First, we wanted to make the constitutional arguments about the 8th Amendment clear and accessible and, in so doing, to show that from a legal perspective there is nothing unusually difficult about legislating for abortion and no reason why, uniquely among medical procedures, it should be regulated within the text of the Constitution. Second, we wanted to show how the Constitution itself could develop after repeal to reinvigorate the personal rights of pregnant people and to strike a balance between protecting these legal rights and pursuing the social objective of preserving foetal life through voluntary, consensual, and well-supported pregnancy. Finally, we wanted to show that, by drawing on experience in other countries and on international human rights law, and by committing to ensuring that pregnant people have sufficient certainty and support to make decisions about their own reproductive lives, a workable, reasonable, and rights-based law on access to abortion can be imagined and designed for Ireland.

Now, with the announcement of the Referendum on the 36th Amendment to the Constitution, we are a step closer to achieving some of these goals, but there is still much work to do. Given this week’s developments, Policy Press has brought forward the publication of the book to 1 February: please circulate information about it to anyone who is involved in the debates around the referendum.

 

Repealing the 8th: Reforming Irish abortion law‘ by Fiona de Londras and Mairead Enright  is publishing on 1 February 2018 and is available with 20% discount on the Policy Press website. Pre-order here for just £10.39.

It will be available Open Access under CC-BY licence.

Find out more about impact, influence and engagement at Policy Press here.

Policy Press newsletter subscribers receive a 35% discount – sign up here.

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.

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

The Lady is not for Wobbling: Mrs May, social care and spending political capital

A shorter version of this blog was originally published by Prospect magazine.

Matt Flinders

When is a wobble not a wobble?

This might not seem the most obvious question to be asking in the context of the current General Election campaign but that’s exactly what makes it so important. Could it be that Theresa May’s recent backtracking on the costs of social care was nothing of the kind? Instead part of a more subtle game of preparing the public for tough choices that will inevitably have to be taken? Have we just witnessed the political equivalent of a footballer’s fake dive?

Partisan politics aside, there is little doubt that Theresa May is an incredibly astute politician.

She plays the game well and to some extent she has re-written the rulebook. The game of politics is rarely as simple as kicking the ball or scoring goals; more concerned with playing other players off against each other, often within your team, and knowing exactly when to go for the legs instead of the ball. The simple point I am making is that Theresa May has climbed to the summit of the British political system as if it really were a weekend wander with Philip.

“[The manifesto] highlighted the existence of major and increasing inter-generational inequalities…”

Continue reading ‘The Lady is not for Wobbling: Mrs May, social care and spending political capital’

Care and caring: challenge, crisis or opportunity?

SusanMYeandle

Sue Yeandle

As the first issue of the International Journal of Care and Caring publishes, Sue Yeandle, Editor-in-Chief, highlights the global space that care now occupies and introduces the journal as a new forum where world-class knowledge about care, caring and carers can be shared.

Issue 1 of the International Journal of Care and Caring is free to access on Ingenta until 30 April.

“From Nairobi to Tokyo, Sydney to Bogota, Montreal to Stockholm and Gdansk to Glasgow – and beyond – care is more visible than ever, and an issue of growing importance all over the world. It is central to human life and relations. It underpins the world’s health, employment and welfare systems. It affects every family and human being on the planet.

“In all its horror, glory and daily realities, care touches us at every level.”

Continue reading ‘Care and caring: challenge, crisis or opportunity?’

It’s not just about the money: 5 dilemmas underpinning health and social care reform

Following on from the publication of the third edition of Understanding health and social care, Jon Glasby looks at what’s needed for long-term, successful health and social care reform.

jon-glasby-pic-2

Jon Glasby

Open any national newspaper or turn on the news and (Trump and Brexit aside) there is likely to be coverage of the intense pressures facing the NHS.

Throughout the winter, there have been stories of hospitals at breaking point, an ambulance service struggling to cope, major problems in general practice and significant financial challenges.

For many commentators, this is one of the significant crises the NHS has faced for many years, and quite possibly the longest period of sustained disinvestment in its history.

“Draconian funding cuts have decimated services at the very time that need is increasing.”

Continue reading ‘It’s not just about the money: 5 dilemmas underpinning health and social care reform’

Get social care right and the NHS will benefit

How can we improve access to and quality of social care? Catherine Needham, co-author of Micro-enterprise and personalisation, discusses how micro-enterprises and micro providers could improve care services. 

catherine-needham-head-shot-b

Catherine Needham

At a time when the Red Cross is warning of a ‘Humanitarian Crisis’ in the NHS, there is a growing recognition that pressure on NHS services will not be alleviated unless we get social care right.

Social care services support frail older people and people with disabilities. They are run by local government and have borne the brunt of the local authority cuts in recent years, with around 26 per cent fewer people now getting help than did in the past.

Many care providers have gone bust due to downward pressures on fees and in many parts of the country it is very hard to recruit trained staff to work in care when the pay rates are higher at the local supermarket.

“It is very hard to recruit trained staff to work in care when the pay rates are higher at the local supermarket.”

Together these pressures contribute to older people being stuck in hospitals, unable to be discharged into the community because the support is not available to them.

Fixing social care

Getting social care right is not a quick fix. Access to good quality, affordable care for people with disabilities and older people is a challenging issue.

Continue reading ‘Get social care right and the NHS will benefit’


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