In ‘It’ Together

‘We are in this together,” “somehow, together, we will get through this.” How many times do family members say this to each other? Perhaps new parents on being given the news that their baby has serious physical or cognitive disabilities. Perhaps a couple where one partner is confronting serious mental health challenges. Perhaps the son or daughter promising an increasingly frail parent that they will do all that is humanly possible to enable them to stay safely in the family home as they want. The 2011 Census identified 6.5 million Britons as carers: “anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is generally unpaid.” (NHS England).

More recent estimates suggest there are nearly 9 million carers today. Between now and 2025, over 11 million more Britons will become carers (somewhat fewer will come to the end of their Caring Journey either because of death or recovery of the person cared for). Across the world, perhaps 700 million or more are caring for loved ones. In the UK, it is more likely that at some stage you will become a carer than that you will own your own home.

For many of us, caring is one of – if not the – most important things we will do in life. It is part of life’s rhythm: of what it is to be human. Nevertheless, caring can have costs: financial (particularly if you have to give up work to care – where there is both an immediate hit from loss of your salary but also the longer-term impact on pension pot and life savings); physical (research repeatedly shows carers neglecting their own health as they prioritise the needs of the person they are caring for); and social: many carers – even well-connected professionals – speak of increasing isolation, loneliness and feeling that their friends do not understand what they are going through.

Carers UK is a national charity which exists to help build a society which respects, values and supports carers. We recently partnered with Centrica / British Gas to make a very short (3.5minutes) film which powerfully captures many of these carer realities:
Two Sides of the Story https://youtu.be/gHQ6hQ3SQUM
Please do watch it. The film was the overall winner of the 2020 Charity Film Awards recently.

Some people are caring for a short period – maybe after a friend or family member has had an operation or is recovering from an accident. Many others are caring for a long time – maybe they know it will be for the rest of their lives. A friend of mine – now in her eighties – continues to look after her middle-aged son who has autism and learning disabilities. As life expectancy increases, there are growing numbers of “young-old” looking after “old-old;” and very elderly couples looking after each other, often where one has physical disabilities and the other, some form of dementia.

Carers UK research undertaken during the current COVID19 pandemic shows how the lock-down is putting a lot more pressure on carers: 70% say their caring has increased. This may be because Day-Care centres and respite care homes have shut or because care-workers who help them look after their loved ones are unable to visit; or simply because daily chores like shopping have become more complex and more expensive, especially when trying to shield vulnerable people.
https://www.carersuk.org/news-and-campaigns/campaigns/caring-behind-closed-doors

In many different spheres now, there is a debate about what #BuildBackBetter might mean. Fairness, social justice and basic cost-benefit analysis, all demand that the post-pandemic recovery must include better, practical support for carers. Otherwise, the idea that “we have all been in this together” will have a very hollow ring to millions of carers.

This needs cross-party agreement on a long-term settlement for a well-funded and stable Social Care system; a decent and fair level of Carers Allowance for long-hours, long-term carers who have to give up their job to care; first-class, and excellent Artificial Intelligence-enhanced Advice & Information; and guaranteed access to quality respite care.

In the average workforce, 1:7 people will be juggling their job and caring for a loved one. Employers, therefore, have a huge role to play in building better support for carers. They need to be ready to help their working carers, with opportunities for flexible working and working from home. Here the widespread predictions that more organisations will, post-pandemic, let more employees work from home, could, with safeguards, help working carers. Although we need also to remember that for some working carers, going to work can be a form of respite from caring.

As a society, we need to recognise that better, long-term funding of the NHS is vital if we are to have a more resilient service (yes, with some built-in redundancy for the low-probability but high-impact events like a pandemic). Whilst this is essential, it is not on its own sufficient. There also has to be far better integration with Social Care – and both need to be carer-friendly: recognising that the bulk of caring is done -unpaid – by families and friends. Independent research for Carers UK in 2015 by Prof Sue Yeandle from the University of Sheffield calculated the replacement cost of this unpaid caring then to be, conservatively, £132 billion p.a. Using the same methodology, this was updated to £139 billion p.a. in 2018 in a paper: “The Carers Covenant” from the think-tank, Demos.
https://demos.co.uk/project/carers-covenant-informal-carers/

These are huge sums – more than seven times the UK’s total annual spend on adult social care, and almost the annual cost of a second NHS budget. These figures alone demonstrate why it is so important to give proper back-up and support to unpaid carers.

I am personally fascinated by Buurtzorg: a pioneering healthcare organisation with a nurse-led model of holistic care that has revolutionised community care in the Netherlands.

According to its website, https://www.buurtzorg.com/about-us/

“Client satisfaction rates are the highest of any healthcare organisation. Staff commitment and contentedness is reflected in Buurtzorg’s title of Best Employer (4 out of the last 5 years). And impressive financial savings have been made.”

Buurtzorg scaled very quickly across the Netherlands from 1 to 850 teams, in just 10 years.

Apart from its applicability to district (community) nursing in the UK, there is potential to apply the Buurtzorg model to domiciliary, paid-for care, provided by small, care-worker led social enterprises and co-operatives, grounded in local communities and helping family carers.

Some carers struggle to pay the costs associated with paid-care – but for many more families, the fundamental issue is being able to find reliable, competent and quality local services – not cost. How many carers have given up their own jobs because the care-workers who came to look after mum, dad etc, were constantly changing and there was no consistency of service?

Artifical Intelligence could massively contribute here. It could help “make” local care markets by bringing together Buurtzorg-style enterprises and families seeking help to care for loved ones. One powerful example of such innovation in practice is the Tribe Project, founded by a very impressive young entrepreneur Richard Howells.
https://tribeproject.org/about/

As we think of a COVID19 UK Recovery Plan for both economy and society, fast-tracking help for innovations like the Tribe Project could be a real win-win.

My personal hope, post-COVID19, is that we will rebuild together and that this will include making it possible for the millions of unpaid carers across the UK to continue living our own lives whilst we care.

David Grayson
Chair Carers UK & Emeritus Professor of Corporate Responsibility at Cranfield University School of Management. He is a long-time campaigner for sustainable development, disability and human rights generally. He writes here in a personal capacity.
http://www.DavidGrayson.net
Twitter: @DavidGrayson_

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In ‘It’ Together

‘We are in this together,” “somehow, together, we will get through this.” How many times do family members say this to each other? Perhaps new parents on being given the news that their baby has serious physical or cognitive disabilities. Perhaps a couple where one partner is confronting serious mental health challenges. Perhaps the son or daughter promising an increasingly frail parent that they will do all that is humanly possible to enable them to stay safely in the family home as they want. The 2011 Census identified 6.5 million Britons as carers: “anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is generally unpaid.” (NHS England).

More recent estimates suggest there are nearly 9 million carers today. Between now and 2025, over 11 million more Britons will become carers (somewhat fewer will come to the end of their Caring Journey either because of death or recovery of the person cared for). Across the world, perhaps 700 million or more are caring for loved ones. In the UK, it is more likely that at some stage you will become a carer than that you will own your own home.

For many of us, caring is one of – if not the – most important things we will do in life. It is part of life’s rhythm: of what it is to be human. Nevertheless, caring can have costs: financial (particularly if you have to give up work to care – where there is both an immediate hit from loss of your salary but also the longer-term impact on pension pot and life savings); physical (research repeatedly shows carers neglecting their own health as they prioritise the needs of the person they are caring for); and social: many carers – even well-connected professionals – speak of increasing isolation, loneliness and feeling that their friends do not understand what they are going through.

Carers UK is a national charity which exists to help build a society which respects, values and supports carers. We recently partnered with Centrica / British Gas to make a very short (3.5minutes) film which powerfully captures many of these carer realities:
Two Sides of the Story https://youtu.be/gHQ6hQ3SQUM
Please do watch it. The film was the overall winner of the 2020 Charity Film Awards recently.

Some people are caring for a short period – maybe after a friend or family member has had an operation or is recovering from an accident. Many others are caring for a long time – maybe they know it will be for the rest of their lives. A friend of mine – now in her eighties – continues to look after her middle-aged son who has autism and learning disabilities. As life expectancy increases, there are growing numbers of “young-old” looking after “old-old;” and very elderly couples looking after each other, often where one has physical disabilities and the other, some form of dementia.

Carers UK research undertaken during the current COVID19 pandemic shows how the lock-down is putting a lot more pressure on carers: 70% say their caring has increased. This may be because Day-Care centres and respite care homes have shut or because care-workers who help them look after their loved ones are unable to visit; or simply because daily chores like shopping have become more complex and more expensive, especially when trying to shield vulnerable people.
https://www.carersuk.org/news-and-campaigns/campaigns/caring-behind-closed-doors

In many different spheres now, there is a debate about what #BuildBackBetter might mean. Fairness, social justice and basic cost-benefit analysis, all demand that the post-pandemic recovery must include better, practical support for carers. Otherwise, the idea that “we have all been in this together” will have a very hollow ring to millions of carers.

This needs cross-party agreement on a long-term settlement for a well-funded and stable Social Care system; a decent and fair level of Carers Allowance for long-hours, long-term carers who have to give up their job to care; first-class, and excellent Artificial Intelligence-enhanced Advice & Information; and guaranteed access to quality respite care.

In the average workforce, 1:7 people will be juggling their job and caring for a loved one. Employers, therefore, have a huge role to play in building better support for carers. They need to be ready to help their working carers, with opportunities for flexible working and working from home. Here the widespread predictions that more organisations will, post-pandemic, let more employees work from home, could, with safeguards, help working carers. Although we need also to remember that for some working carers, going to work can be a form of respite from caring.

As a society, we need to recognise that better, long-term funding of the NHS is vital if we are to have a more resilient service (yes, with some built-in redundancy for the low-probability but high-impact events like a pandemic). Whilst this is essential, it is not on its own sufficient. There also has to be far better integration with Social Care – and both need to be carer-friendly: recognising that the bulk of caring is done -unpaid – by families and friends. Independent research for Carers UK in 2015 by Prof Sue Yeandle from the University of Sheffield calculated the replacement cost of this unpaid caring then to be, conservatively, £132 billion p.a. Using the same methodology, this was updated to £139 billion p.a. in 2018 in a paper: “The Carers Covenant” from the think-tank, Demos.
https://demos.co.uk/project/carers-covenant-informal-carers/

These are huge sums – more than seven times the UK’s total annual spend on adult social care, and almost the annual cost of a second NHS budget. These figures alone demonstrate why it is so important to give proper back-up and support to unpaid carers.

I am personally fascinated by Buurtzorg: a pioneering healthcare organisation with a nurse-led model of holistic care that has revolutionised community care in the Netherlands.

According to its website, https://www.buurtzorg.com/about-us/

“Client satisfaction rates are the highest of any healthcare organisation. Staff commitment and contentedness is reflected in Buurtzorg’s title of Best Employer (4 out of the last 5 years). And impressive financial savings have been made.”

Buurtzorg scaled very quickly across the Netherlands from 1 to 850 teams, in just 10 years.

Apart from its applicability to district (community) nursing in the UK, there is potential to apply the Buurtzorg model to domiciliary, paid-for care, provided by small, care-worker led social enterprises and co-operatives, grounded in local communities and helping family carers.

Some carers struggle to pay the costs associated with paid-care – but for many more families, the fundamental issue is being able to find reliable, competent and quality local services – not cost. How many carers have given up their own jobs because the care-workers who came to look after mum, dad etc, were constantly changing and there was no consistency of service?

Artifical Intelligence could massively contribute here. It could help “make” local care markets by bringing together Buurtzorg-style enterprises and families seeking help to care for loved ones. One powerful example of such innovation in practice is the Tribe Project, founded by a very impressive young entrepreneur Richard Howells.
https://tribeproject.org/about/

As we think of a COVID19 UK Recovery Plan for both economy and society, fast-tracking help for innovations like the Tribe Project could be a real win-win.

My personal hope, post-COVID19, is that we will rebuild together and that this will include making it possible for the millions of unpaid carers across the UK to continue living our own lives whilst we care.

David Grayson
Chair Carers UK & Emeritus Professor of Corporate Responsibility at Cranfield University School of Management. He is a long-time campaigner for sustainable development, disability and human rights generally. He writes here in a personal capacity.
http://www.DavidGrayson.net
Twitter: @DavidGrayson_

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