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£5.3bn cost to the economy in lost earnings of carers giving up work to care

Carers UK has written to the Chancellor George Osborne and Work and Pensions Secretary Iain Duncan Smith urging them to protect carers and disability benefits from any measures to freeze benefit levels. The letter follows media reports that the Government is considering benefit freezes as part of further reductions in public expenditure. 

Carers UK urges action to tackle barriers to families accessing telecare benefits 

New research from Carers UK has shown that, despite huge potential benefits of using telecare and telehealth, families caring for ill, frail and disabled loved ones are still facing barriers to accessing the services.

Carers UK has responded to new research from Which? published today, highlighting serious failings in homecare for older people and the impact this is having on their families. 

Carers UK has expressed disappointment that the Government has today refused to support a backbench Bill designed to improve identification of carers and improve access to services to support carers and disabled people.

MPs urged to support business-backed care Bill to support ‘work, families and the economy’

Today (Friday 7th September) MPs will debate a backbench Bill to improve support services for carers and disabled people. A cross-party group of MPs, led by Barbara Keeley MP, has brought forward the Social Care (Local Sufficiency) and Identification of Carers Bill, designed to ensure disabled people and carers have access to support services to allow them to stay in or return to work.

Mirroring transformative duties on councils to promote childcare, the Bill would stimulate provision of care services, ensuring enough are available in each local area to allow families to work alongside caring for ill or disabled loved ones, and to support disabled people to work. The legislation would also place duties on GPs, NHS and social care staff to identify and support family members taking on caring responsibilities for older or disabled people. 

In addition to support across the charity sector including from Carers UK, Alzheimer’s Society, Scope and Age UK; the Bill has won key backing from employers including BT, British Gas and Pricewaterhouse Coopers. Supporters of the Bill argue that, just as childcare duties brought about a revolution in provision allowing parents of young children to work; duties on councils to ensure sufficient care and support services for older and disabled people, would reduce worklessness and the numbers of essential staff quitting their jobs to care. 

Caroline Waters OBE, Director of People and Policy at BT Group and Chair of business forum Employers for Carers, said: “We are seeing the mounting costs, not just to families but to business of a care system that often cannot support carers trying to juggle work with care. Stimulating the care market can deliver an economic triple win – better services for families, the infrastructure to help employers retain skilled staff and a real boost to economic growth. The debate started 20 years ago with childcare and there is now a pressing need to bring the same focus and progress to care for older and disabled people. This Bill would start this important process by placing a duty on local authorities to ensure a supply of care as is already the case with childcare.”

Barbara Keeley MP, who is promoting the Bill, said: “Families and businesses are now feeling the combined effects of a growing demographic challenge and the economic crisis. This Bill would help ensure that the services are in place to keep families in work alongside caring responsibilities. This is vital for carers themselves but also for business and the wider economy. The cross-party support for this Bill shows the growing recognition from all parties of the critical role that care services play in supporting families, employers and the economy.”

Heléna Herklots, Chief Executive of Carers UK, said: “With rapidly increasing numbers of older and disabled people it is essential that workplaces and services adapt to the new reality of family life. We know around 1 million people have already had to reduce working hours or quit their jobs to care for ill or disabled loved ones, and disabled people are often unable to get the support they need to work. This Bill could represent a step-change in how care services are delivered that supports families, work and economic growth and productivity.”

The Bill will be debated by MPs on Friday, when Barbara Keeley MP will be joined by the Bill’s Labour, Conservative, Liberal Democrat and Green co-sponsors, including Dr Hywel Francis MP, who has piloted through previous successful carers’ rights Private Members Bills; Sir Tony Baldry MP; Sarah Newton MP, Laura Sandys MP, Stephen Lloyd MP, Annette Brooke MP, Diana Johnson MP, Sharon Hodgson MP, Heidi Alexander MP, Alex Cunningham MP and Caroline Lucas MP. 

Organisations and individuals can add their support here...


Steve McIntosh, Carers UK
Tel: 0207 378 4937
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Chloe Wright, Carers UK
Tel: 0207 378 4942
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Charities supporting the Bill: Carers UK, Age UK, Disability Rights UK, Marie Curie Cancer Carers UK, Scope, Leonard Cheshire Disability, Carers Trust, Alzheimer’s Society, Guide Dogs, Parkinson’s UK, RNIB, Independent Age, Rethink Mental Illness, Action for Children, MND Association, British Association of Social Workers, Arthritis Care, Home Group, Real Life Options, National Family Carer Network, Autism-in-Mind, British Polio Fellowship, United Response, Centre for Policy on Ageing, Multiple System Atrophy Trust, Grandparents Plus.



ITV has announced that Carers UK is amongst six charities which will be supported by Text Santa, their major fundraising campaign, this Christmas. 

Responding to the publication of the social care White Paper, draft Care and Support Bill and progress report on funding, Carers UK Chief Executive Heléna Herklots said:

“Every one of us will need or provide care to ill, frail or disabled loved ones at some point in our lives. We all need to know that, when caring affects us, we have the right to support and services to enable us to stay healthy and live lives alongside caring. 

The Government’s proposals for reforming social care law are a real step forward in the rights of carers. The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in Government legislation and, for the first time, equalise carers’ rights with disabled people rights. This is significant progress for a group who frequently feel like second class citizens - unrecognised for the contribution they make to society and left in ill-health and financial hardship as a result of caring.

But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.

There are over a million people caring for over 50 hours a week in the country – many feel pushed to breaking point and are desperate for support now. These carers were looking to this announcement to show that the Government recognises the urgency of this crisis in social care – they will despair at yet more delay in tackling the fundamental challenge of social care funding.”

Read Carers UK's expert briefings of the White Paper, draft Care and Support Bill and progress report on social care funding at:


Carers UK has joined forces with Barbara Keeley MP and a cross party group of MPs to work on a new piece of legislation to improve the supply of social care and help identify hidden carers.

Barbara Keeley MP, a long-term advocate for carers, secured a spot in the parliamentary calendar for a ‘Private Member’s Bill’ – a piece of legislation proposed by a backbench MP rather than the Government – and chose to use the opportunity to champion carers.

A cross-party group of MPs are co-sponsoring the Bill including Conservative MPs Sir Tony Baldry, Sarah Newton and Laura Sandys; Liberal Democrat MPs Stephen Lloyd and Annette Brooke, Green MP Caroline Lucas and Labour MPs Sharon Hodgson, Dr Hywel Francis, Alex Cunningham, Diana Johnson and Heidi Alexander.

The bill, the Social Care (Local Sufficiency) and Identification of Carers Bill, aims to;

  • revolutionise the way that local authorities plan social care services in their areas for people who buy services themselves as well as those who rely on council social care services.
  • focus on ensuring the right services are planned and developed to help carers struggling to juggle work and caring for ill or disabled loved ones
  • create duties on the NHS, schools, colleges and universities to identify carers and signpost then to support and advice.

‘Sufficiency of supply’ – improving the supply of care services

The bill places a duty on local authorities to conduct an assessment of the social care services available in their area, looking at whether sufficient and relevant care is being made available to people with disabilities and carers.

The proposed legislation will recognise for the first time the need for carers and people with disabilities to have the right services in place to allow them to remain in, or join the workforce.  Local authorities currently have the same important role to ensure childcare is there to help parents work, and this new Bill would begin to develop this role for councils in social care. 

Currently an estimated 1 in 6 people is forced to give up work to care. Given the demographic trends where a shrinking workforce is being asked to work longer to meet growing care and pensions bills, this is clearly unsustainable.

Significant proportions of disabled people feel they can work and analysis in 2010 found that supporting social care users to access paid employment could generate earnings of up to £800 million each year, a reduction in benefits spending of £300 million (as well as extra income from tax and National Insurance). Research last month from Age UK showed that the cost to the Government of carers being forced to give up work to care had reached £5.3 billion in lost tax revenues, lost earnings and increased benefit payments.

The Bill reflects the economic imperative to help people juggle work and care and to support people with disabilities to work. Similar legal provisions around ‘sufficiency’ for childcare, introduced in 2006, helped stimulate growth in childcare services and Carers UK has argued that these duties for social care could help ensure families get the support they need.

Identifying hidden carers

We know that carers often take a long time to identify themselves as carers. Carers UK found that 25% of carers took 5 years or more to recognise themselves as a carer and each year about 2.2 million people start caring and a similar proportion cease caring.

By placing duties on health and education bodies, the Bill would speed up the identification of carers and allow help and support to be made available earlier.

Turning the Bill into law

Taking legislation from backbench MPs through Parliament is always challenging but Carers UK has a great track record.  We have successfully brought three Private Members Bills through the UK Parliament. Out of this work came new rights for carers to have their needs assessed, enshrining in law the principle that carers should have a life of their own in the Carers (Equal Opportunities) Act 2004.

Barbara Keeley’s Bill is the next step in winning additional support for carers and disabled people and Carers UK will be using our expertise and working hard to build support for the legislation and get it on the statute book.

Emily Holzhausen, Director of Policy at Carers UK said;

“This is a fantastic opportunity to make a difference to the lives of carers and disabled people. Every day we hear about carers who’ve been struggling to care for their families, not knowing what support is available to them - new duties on health bodies, schools and other educations institutions to identify carers will enable them to get help earlier.

Barbara Keeley’s Bill could also bring about a revolution in the way councils plan and commission social care services – for the first time looking at whether families have enough access to care, particularly the support they need to juggle work and care.

It is always tough to win Private Member’s Bills and we really need the support of carers, local groups and national partners to help make the case to Government.”

Add your support for bill by completing our quick online form




In advance of the publication of the Government's White Paper on social care next week, Carers UK Chief Executive Heléna Herklots said:

“Reform of social care is long overdue for the 6.4 million unpaid carers in the UK, particularly the million people caring for over 50 hours a week for ill frail or disabled loved ones. The care provided by these unpaid carers far outweighs that provided by social care services and it is time we invested properly in supporting them. 

Families need several key things from this White Paper: funding solutions to tackle the current crisis in social care and to meet rising demand in the long-term; structural reform of an outdated, confusing and unfair care system; and an urgent timetable for deliver. None of these things alone will deliver the reform needed. 

The social care system has been chronically starved of the funding it needs for years. Action must be taken for the short and long-term to address the current crisis in care funding - setting the social care system on a sustainable course for the long-term.

Older and disabled people and carers also need a social care system which gives them certainty and clarity about the care they are entitled to, wherever they live; protection from catastrophic care costs; advice and information when they need it and guarantees of quality care. 

Delay is not an option. Families are feeling the impact of the crisis in social care now - in crippling care bills, poor quality care or simply being left without support, pushed to breaking point caring for ill or disabled loved ones. 

To recognise the urgency of this challenge and the desperation and fear caused by each day of delay, families will demand an urgent timetable to implement the reform needed.”

New poll shows 9 in 10 of public reject current social care funding system

 One year after the Dilnot Commission’s report into the funding of long term care,  an ICM poll reveals that 89% of English adults believe that older and disabled people shouldn’t have to bear all the costs for support with everyday tasks such as eating, washing and dressing, even if they have a small amount of savings

Responding to the research, Heléna Herklots, Chief Executive of Carers UK, said: “All of us will need care or provide care to a loved one at some point in our lives and it is clear that most of us fear the costs this will bring. Families across the country are struggling with the consequences of a care system in crisis – pushed out of work and into ill-health, financial hardship and isolation by caring, and often facing huge care bills to pay for basic support. The Government must act to tackle the crisis in social care funding to deliver the support families need and protect them from what can be catastrophic care costs.”

The results represent a wholesale rejection of the current system, in which if you have more than £23,500 in savings and need support with basic tasks like eating, washing, dressing or leaving the house you have to pay the full costs of that care.

At present, every adult in England has a one in two chance of needing care costing £20,000 or more in life and a one in ten chance of needing care costing £100,000 or more. Once you move into a residential home the value of your house is included in calculating your savings.

Under the Dilnot proposals, a suggested £35,000 limit would be placed on the amount of money that an individual would have to pay towards their care.

Almost seven out of ten (68%) in the ICM poll commissioned by the Care and Support Alliance, believe that older and disabled people who need support with basic tasks don’t currently receive enough support.

The survey also revealed that nearly half of respondents (46%) know of someone in their family who has needed care and support with basic everyday tasks such as eating, washing and dressing and a further 4% had needed it themselves.  This shows that the issue of social care is one that touches all age groups and is far from being a niche concern.

The ICM poll of 1000 English adults was commissioned by the Care & Support Alliance, a coalition of more than 65 organisations representing older and disabled people.

The Care & Support Alliance is calling for the Coalition Government to publish its promised White Paper and funding progress report into long term care now – before the summer recess.  The Alliance warns any further delays are likely to hinder the progress of the draft Care and Support Bill, announced in the Queen’s Speech last month and cause even more misery to the hundreds of thousands of older and disabled people who desperately need reform to happen.

The Care & Support Alliance is urging all those who care about the future of social care to write to their MP expressing their concerns and fears about the current system.


Notes to editors

The Care & Support Alliance is a consortium of over 65 organisations that represent and support older people, disabled people and people with long-term health conditions and their families. We are working together to promote urgent reform to tackle the crisis in our care system

ACEVO, Action for Advocacy, Action on Hearing Loss, Afiya Trust, Age UK, Alzheimer’s Society, Anchor, Carers Trust, Carers UK, Centre for Policy on Ageing, CLIC Sargent, Contact a FamilyDisabilities Trust, Disability Rights UK, ECCA, EDCM, Grandparents Plus, Guide Dogs, Help the Hospices, Home Group, Housing 21, Huntington’s Disease Association, Independent Age, Jewish Care, Learning Disability Coalition, Leonard Cheshire Disability, Macmillan Cancer Care, Marie Curie Cancer Care, Mencap, MND Association, MS Society, Muscular Dystrophy Campaign, NAT, National Autistic Society, National Care Forum, National Council for Palliative Care, National Family Carers Network, National Rheumatoid Arthritis Society, National Voices, Papworth Trust, Parkinson’s UK, RADAR, Relatives and Residents Association, Resolution Foundation, Rethink Mental Illness, RNIB, Scope, Sense, Shaping Our Lives, Shared Lives Plus, Stroke Association, Sue Ryder Care, Terrence Higgins Trust, Turning Point, United Response, Vitalise, VoiceAbility, WRVS, United Kingdom Homecare Association.


The three finalists for the Carers Award; Margaret Baker, Sue Colley and Christine Hayden were announced and celebrated at the Great British Care Awards 2012 with a standing ovation by 550 guests on Saturday 23 June 2012. Margaret Baker was selected as the overall winner.

National volunteering charity TimeBank has been awarded a grant of £256,273 by the Big Lottery Fund to support carers in an innovative volunteering project in partnership with Carers UK.

During Carers Week, employers and HM Government commit to new working group to deliver a 'triple win' for families, employers and the economy.

Call for urgent action on care crisis as shocking new Carers Week research shows two in five carers are sacrificing their own health by putting off medical treatment to care.

On 23 May a group of 11 carer volunteers attended a conference organised by the Royal College of GPs. The main aim of the conference was to discuss the critical role that GPs and primary care teams can play in supporting carers and those they care for.

Carers UK and Nutricia have teamed up to provide Nutricia nurses with a new resource aimed at getting advice to relatives who are caring for those loved ones.

The Government has announced in the Queen's Speech, which sets out the parliamentary programme for the next year, that a draft Care and Support Bill will be published - but that full legislation would be postponed until the next parliamentary session.

Carers UK has joined an unprecedented group of leaders from local government, NHS and social care services, businesses and unions in an open letter calling on the Prime Minister to take urgent action to tackle a growing crisis in care for older and disabled people.

Carers UK calls for care growth strategy as new figures show cost of families forced to give up work to care reaches £1.3bn

Carers UK has today joined with business leaders to call for a new strategy to stimulate growth in services to support older and disabled people and deliver a ‘triple win’ for families, employers and the economy.

Couples with children who are receiving Working Tax Credit where one partner is receiving Carer’s Allowance are at risk of losing their full tax credits unless they contact the Tax Credit Office by 6th April.

From the 6th of April the Government is increasing the number of hours a couple with children has to work in order to receive Working Tax Credit (lone parents are not affected).

Instead of needing to work for 16 hours or more a week couples with children will have to work 24 hours a week or more. If they are unable to find the extra hours they will lose their entitlement to Working Tax Credit.

However, following campaigning from Carers UK and other groups including the Low Incomes Tax Reform Group and USDAW the union, the Government has announced that couples including someone on Carer’s Allowance will be exempt from this increase from 16 to 24 hours.

This means that a couple with at least one dependent child and where one partner is entitled to Carer’s Allowance, will continue to be able to receive Working Tax Credit if one parent is working for at least 16 hours a week. This includes people with an ‘underlying entitlement’ to Carer’s Allowance - where you are entitled to the benefit but it is not being paid to you because you receive other benefits which are seen to ‘overlap’ with Carer’s Allowance.

The Tax Credits Office should already know that someone in your household is receiving Carer’s Allowance if you informed them of this when you claimed Working Tax Credit. However if you are not sure, and particularly if you have started to receive Carer’s Allowance since you claimed Working Tax Credit, you should contact the Tax Credit Office to confirm you are entitled to Carer’s Allowance.

To contact the Tax Credit Office, you can call 0345 300 3900, email via or write to:

Tax Credit Office


You should provide your full name, date of birth, National Insurance Number and email address (if you have one) and inform them that you fulfil one of these exceptions.

New entitlement to childcare costs

As well as protecting carers from this change, the Government has announced that couples receiving Working Tax Credit which include someone receiving Carer’s Allowance will now be able to claim extra tax credits for childcare if they pay for registered/approved childcare.

Again, if this applies to you, you should inform the Tax Credits Office to ensure you receive the extra amount. You can do this from 6th April, but should do it by 6th May 2012.

For more information on the Government’s other changes to the benefits system, read our Welfare Reform Frequently Asked Questions for further details about tax credits, you can visit the HM Revenue & Customs website

Carers UK and the Social Care Institute for Excellence (SCIE) are launching a new reablement briefing at the Southwark Resource Centre today.

Following a joint campaign with other family charities and unions, Carers UK has welcomed a Government decision to exempt carers from changes to Working Tax Credit which could have resulted in the loss of almost £4,000 a year in tax credits.

In a new report published today, Carers UK has called for a technological transformation to support families caring for ill, frail and disabled loved ones.

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