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Carers Week 2013 10th – 16th June - Prepared to Care?

New research from Carers Week of over 2,100 carers has revealed that carers are being woefully let down by a lack of support when they first take on a caring role. The findings from the report, Prepared to Care? show that support is not being made available to new carers with often devastating consequences.

Released to coincide with the launch of Carers Week 2013, the findings show that 75% of carers were unprepared for all aspects of caring. A further 81% of carers say they were not aware of the support available1 and 35% believe they were given the wrong advice about the support on offer2.

With around 6.5 million carers in the UK3 and 6,000 people taking on a new caring role every day4, the charities within the Carers Week partnership are calling for the government, GPs and health and social care professionals to ensure that more support is given to carers from day one of their caring role.

The research goes on to outline the huge emotional, physical and financial effects that caring can have as people are not prepared for the impact of their caring role.

Impact of caring

The survey shows that carers often struggle to balance work and their caring responsibilities, with 45% of carers saying they had to give up work.

The results also highlight how carers’ physical, emotional and mental wellbeing can suffer. 61% of carers have experienced depression and nearly all carers surveyed (92%) say they feel more stressed because of their caring role.

The survey also emphasised the strain that caring can put on people’s relationships. 52% of respondents have experienced difficulties in their relationship with their partner and 61% have found it difficult to maintain friendships.

Helen Clarke, Carers Week Manager, commented: “The impact of caring for a loved one or friend is an issue that we simply cannot ignore. Every day across the country, 6,000 people take on new caring responsibilities and too often they face the challenges of caring without support. Becoming a carer can happen overnight and without information and guidance, carers can be left feeling isolated and alone.

“The figures clearly show that carers aren’t being offered support and if they are, it can often be wrong or not the full information. The consequences for carers are huge, so it’s vital that GPs, health and social care professionals and the government all play a role to ensure that carers are offered the support they deserve from day one.”

Heléna Herklots, Chief Executive of Carers UK- one of the Carers Week charity partners - said: “There are 6.5 million carers in the UK saving society over £119 billion a year with the unpaid care they provide. Given this massive contribution, when they start to care, families must get support, advice and information early, to enable them to juggle care and work, stay healthy and to live their own lives alongside caring. Without the right support, the impact on carers' health and finances can be devastating and can bring wider costs to society and the economy, if they are pushed to breaking point."

Shane Wood, aged 45, who cares full time for his partner, Pete, aged 50, who has Parkinson’s, explained how he felt when he first started caring: “When Pete was diagnosed, we weren't referred to relevant services by our GP and combined with my increasing caring duties this lack of support ended up putting a huge strain on our relationship. The only time I felt we got the support we needed was a few years in when things reached breaking point. By then I got to the point where I had I lost myself in the caring role. I didn't recognise who I was anymore - I was tired and short tempered all the time, and my friends told me I needed to get help because I simply couldn't cope.”
Carers flagged as part of the survey that they would have benefitted from better support and information from day one. As part of the report, Prepared to Care? carers stated what would have made a difference to their experience, they included:

  1. Better public understanding and recognition of carers.
  2. Access to information and the right support from the beginning.
  3. Professionals understanding the role of carers and sharing information, decision making and planning with them.
  4. Access to high quality practical and emotional support and information as well as breaks from caring.
  5. Flexible working practices and understanding from employers.
  6. Financial support and a fair and easy to navigate welfare system.

Carers Week is delivered by a partnership of national charities – Age UK, Carers Trust, Carers UK, Independent Age, Macmillan Cancer Support, Marie Curie Cancer Care, MS Society, Parkinson’s UK and supported by the Stroke Association and Bupa’s Carewell. In 2013 it is sponsored by Sainsbury’s Plc and the sector skills council in England, Skills for Care.

Keep up to date with campaign developments at
Twitter @carersweek

- ENDS -

For media enquiries, interview requests and case study requests, please contact Kim Atkins at Carers Week on 020 7378 4958 or 07787115329 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Copies of the report, Prepared to Care? are available for journalists under embargo. To receive a copy under embargo, please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

1. 52% of carers were definitely not aware of support available and 29% were partly not aware of support available
2. 16% of carers were definitely given wrong advice about support available and 19% were partly given wrong advice about support available
3. 2011 Census figures for England, Wales and Northern Ireland including projected figure from Valuing Carers 2011 for Scotland
4. Carers UK (2006) In the Know. The importance of information for carers

Carers Week surveyed 2,115 carers between March and May 2013. The majority of respondents completed the survey online, with eight respondents completing paper versions. 1,303 of the respondents were from England, 75 from Northern Ireland, 151 from Scotland and 92 from Wales (the remainder did not state their location).

Notes for editors:

  1. Carers Week is delivered by a partnership of national charities – Age UK, Carers Trust, Carers UK, Independent Age, Macmillan Cancer Support, Marie Curie Cancer Care, MS Society, Parkinson’s UK and supported by the Stroke Association and Bupa’s Carewell. In 2013 it is sponsored by Sainsbury’s Plc and the sector skills council in England Skills for Care.
  2. Carers Week takes place to recognise and celebrate the UK’s 6.5 million carers and encourage them to access the support, advice and information they need that can help improve their lives and the people they care for.
  3. Over 2,300 organisations take part in Carers Week, including local charities and voluntary organisations, hospitals, hospices and care homes and a growing number of employers.

Carers UK has responded to figures published today by the Health and Social Care Information Centre showing 65% of carers receiving social care support were satisfied with the services they and their families received.

1 in 4 baby boomer women caring as generation struggles with work-life-care balance

1.3 million over-65s caring for disabled or older loved ones

Carers UK has welcomed the publication of the Care Bill – a landmark piece of legislation to consolidate social care law and new duties that pave the way for more modern support to help meet the needs of our changing society.

The Bill implements many of the recommendations from the Dilnot Commission on long-term care, including putting in place a cap on the amount of money individuals have to pay towards their care; and also includes increased rights for millions of unpaid carers across England.
A draft version of the Bill was published in July 2012 and was subject to scrutiny by a parliamentary committee of MPs and Peers (the Joint Committee on the Draft Care and Support Bill) and carers, older and disabled people’s organisations.

Carers UK has said that the Government has made important changes to the full Care Bill, published today (10th May 2013), which help improve families’ access to care and support services.

Carers UK had called for a boost to measures in the draft legislation to ensure that planning for care services were sufficient for disabled and older people and their families, particularly to help disabled people and carers work, train and learn.

Last year the charity supported Barbara Keeley MP to bring a Private Member’s Bill to Parliament which would have put in place this sufficiency of support duty. Although that Bill did not progress, its vision has now been accepted by the Government who have responded in the Care Bill, by placing a new requirement on local authorities to ensure there are sufficient care and support services to meet current and future needs. This would have a particular focus around work.

Heléna Herklots, Chief Executive of Carers UK, said: “'Carers UK has fought for years for care and support services to be seen as not only vital for older and disabled people, but as enablers for their families to work and live lives of their own alongside caring. Government has listened, and these new duties on councils will, for the first time, ensure that they look at and plan for services which help carers and disabled people, in particular if they wish to work. Councils will have to have regard to the level of and type of support which would be sufficient to meet current and future demand for services. This has the potential to modernise the supply of these vital services.”

“These provisions are vital if we are to “age proof” our society. With a growing ageing population more people will be taking on caring responsibilities and juggling care with work. We need a modern and flexible care system to meet these challenges faced increasingly by families. The new provisions in the Bill set out the framework for that to happen. Without these services, family members are unable to stay in work – something which costs the economy up to £5bn every year.”

Carers UK had also called for a number of other important changes to the draft legislation which have been implemented in the Care Bill. The legislation now makes clear that new duties on promoting wellbeing will apply not just to older and disabled people, but also to their carers.The charity had also expressed concerns that the draft legislation could mean that carers could be charged for services provided to the person they care for, and has pledged to work with the Government to clarify this as the Care Bill is debated in Parliament. Carers UK has also urged the Government to ensure that improvements to carers’ rights included in the Bill are extended to all carers and that funding is put in place to ensure that new duties to support families can be delivered.

Carers UK has said that, in responding to the Joint Committee’s recommendations, the Government must address the problem that parents of disabled children will not have their rights to assessment and support enhanced by the Bill and will be left with lesser rights than other carers. The charity has urged the Department of Health to urgently work with the Department for Education to make sure this is rectified through the Children and Families Bill going through Parliament.

Heléna Herklots said: “This Bill marks a further and significant step forward in the rights of families who care for older or disabled loved ones; improving access to an assessment of carers’ own needs and new duties to support families who care. To make these rights a reality for families, in addition to ensuring that all carers have equal rights, whether they are caring for a parent with dementia or a disabled child, Government must also take action on the chronic underfunding of social care services.”

“The Bill needs a robust funding settlement which enables the Government to realise the vision that is set out in this landmark legislation. Without this kind of investment, the new legislation will fall short of its potential, leaving many families struggling without the right support and giving up work to care.”


Notes for Editors:

1.Carers UK is a charity set up to support the millions of people who care for an older relative, a sick partner or a disabled family member. Carers UK:supports carers and provides information and advice about caring
influences policy through our research base
campaigns to make life better for carers
2.The Social Care (Local Sufficiency) and Identification of Carers Bill is a Private Members Bill drafted by Carers UK with the support of Professor Luke Clements and introduced by Barbara KeeleyIt did not progress through all of its stages to become law and the Minister, during debate, pledged to consider the sufficiency of supply measures for this piece of legislation.

Carers UK has warmly welcomed enhanced rights for carers in England which will be included in new legislation announced in the Queen’s Speech.

The new Bill should make it easier for carers to be assessed for support and clarify where they have a right to support services from their local authority. Duties on councils to provide information and advice on social care funding will also help families plan for the future and be aware of what help and support is on offer.

Looking ahead to the publication of the Bill, Carers UK Chief Executive, Helena Herklots warned; “In order for these important and welcome new rights to become a reality for carers, Government must address the social care funding gap which is growing as demand for care and support services increases and local authority budgets are cut.”

Having analysed draft proposals published by the Government and presented evidence to Parliamentarians, Carers UK has also called for a number of important changes to be made to the legislation before it is introduced to Parliament. The charity argues that it must be clear that carers have a right to an assessment of their need for support regardless of their financial circumstances, warning that without a change to the draft Bill, there is a risk that carers will be wrongly charged for services that are provided for the person they care for.

Finally Carers UK is deeply concerned that not all carers will benefit from the enhanced rights in the Bill. “Under existing plans parents caring for disabled children and young carers will not have the same new rights that adults caring for adults will have under the legislation. This must change, as parent carers and young carers cannot be left behind” Helena Herklots added.

Carers UK has written a list of key changes needed when the Care and Support Bill is published

A short briefing on what the legislation in the Queen's Speech means for carers is available here...

Carers UK warns welfare and care cuts risk turning the clock back on carer support.

Charity says families face ‘years of anxiety’ as disability benefit changes start

Charity steps up campaign to exempt carers from ‘spare room’ penalty

March 20 2013 : In addition to downgrading forecasts for economic growth, the Chancellor announced a number of tax changes including some tax cuts, additional cuts to public spending, support with childcare vouchers, and the bringing forward of significant policies including State Pension reform and a cap on the costs of care.

The following is a short summary of how the announcements in the March 2013 Budget will affect carers and their families.

Carers UK has warmly welcomed a cross-party report from the Joint Committee on the draft Care and Support Bill, scrutinising the Government’s plans for social care legislation.

A staggering 2.3 million adults have given up work to care for an elderly parent, disabled or seriously ill loved ones, Carers UK and business forum Employers for Carers (EfC) today reveal.

A Carers UK/YouGov Poll shows just over 1 in 5 UK adults have seen their work negatively impacted as a result of caring (22%), including 2.3 million[1] who have quit work and almost 3 million[2] who have reduced working hours.

The impact was highest amongst 45-54 year olds, where more than 1 in 4 reported that caring had taken a toll on their work (27%).

Carers UK has pointed to the impact on family finances of giving up work or cutting working hours – including the risk of financial hardship and debt and the long-term damage to carers’ careers and pensions. Previous estimates also indicated that the cost to the economy of carers being forced to give up work to care showed had reached £5.3 billion in lost tax revenues and earnings and additional benefit payments[3].

The new polling is published to coincide with the 10th anniversary since Employers for Carers began as a special group which, chaired by business leaders and supported by charity Carers UK, helps employers to support and retain the 1 in 7 carers in any workplace.

Heléna Herklots, Chief Executive of Carers UK said:

 “Caring for ageing parents or a disabled loved one is part and parcel of life, but these figures show that families are still not getting the support they need to enable them to balance work, life and caring.

As with childcare a generation ago, employers can play a critical role in shifting how we as a society support people with family responsibilities. But support from employers can only go so far, and families need to be able to access reliable, good quality and affordable care and support services to enable them to juggle work and care. Without urgent action from Government to ensure families can access this support, millions more will see their careers and earnings suffer - with long-term personal costs to families and significant costs to business and the UK economy.”

 New Employers for Carers Chair, Ian Peters, Managing Director of British Gas Residential Energy [4], said

“Employers for Carers has led the way in promoting effective workplace practice to support staff with caring responsibilities. Our core message is that supporting carers in our workforces is not just about being a good employer, it is good for business - improving productivity and reducing workplace stress, reducing staff turnover and recruitment costs, and enabling us to retain the talent and experience of staff who we would otherwise lose.

However these findings highlight that much more needs to be done to make supporting colleagues who juggle work and care part of normal workplace practice, and ensure that families can access the advice, support and services they need to enable them to combine work and home life.”

Employers for Carers comprises 70 employers and over one million employees. Member organisations range from micro businesses, to SMEs and large employers such as Sainsbury’s, BT Group, British Gas, PricewaterhouseCoopers and London Fire Brigade.


Notes for Editors:

Employers for Carers is a growing membership forum of employers committed to working carers, chaired by BT (to be replaced by British Gas from April) and supported by the specialist knowledge of Carers UK. With over 70 member organisations representing over a million employees from the private and public sectors, its key purpose is to provide practical advice and assistance to employers seeking to support and retain the 1 in 7 carers in their workforce. It has longstanding experience of working with employers such as BT, British Gas/Centrica, the Metropolitan Police, PricewaterhouseCoopers and the NHS, to support carers wishing to remain in or return to work.

The Carers UK/ YouGov total sample size was 2073 adults. Fieldwork was undertaken between 1st - 4th FebruaryThe survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). According to the 2011 Census the UK adult population (18+) is 49,264,545.

When asked “has caring for an elderly parent or, a seriously ill or disabled loved one (i.e. helping with washing, dressing, eating,  hospital visits, running errands etc.) ever had any impact on your work?” those with caring roles answered:

A total of 22% stated their work had been affected - 4% gave up work to care for an elderly parent, or an ill or disabled loved one; 6% reduced their working hours to care for an elderly parent, or an ill or disabled loved one; 10% said their work  had been negatively affected by caring for an elderly parent, or an ill or disabled loved one (e.g. stress or tiredness); 4% said other impact. 16% said they had cared for an elderly parent, or an ill or disabled loved one, but their work was not affected.

The Carers UK/YouGov poll forms part of the recently launched Carers UK Caring & Family Finances Inquiry.  For more information on the Carers UK Caring & Family Finances Inquiry, please visit


[1] 4.47% of UK adults polled said that they had given up work to care – the equivalent of 2,315,433 adults

[2]  5.79% said they had reduced working hours – representing 2,852,417 adults

[4] In April, Ian Peters replaces Caroline Waters OBE, formerly Director of People and Policy at BT who has become Deputy Chair of the Equality and Human Rights Commission

Government urged to exempt carers and their families from controversial charges for ‘spare rooms’

Carers UK, with six other national charities, is urging the Government to use the forthcoming Budget to ensure carers and disabled people in social housing do not face ‘bedroom tax’ payments.

Office for National Statistics (ONS) confirms Carers UK analysis showing rise of 11% in number of carers

Disability benefit changes to lead to shock £31 million cut in carers' benefits.

Carers UK responds to Government announcement on cap on the costs of care

Carers UK launches inquiry into financial realities of caring for older parents or disabled loved ones as poll shows widespread anxiety about care costs

The report by Mid Staffordshire NHS Foundation Trust Public Inquiry, chaired by Robert Francis QC, has been published today and calls for “fundamental change" in the culture of the NHS to ensure patients are cared for properly.

The number of people providing unpaid care for disabled, sick or elderly relatives and loved ones has risen substantially in the last decade.

Carers UK Chief Executive, Heléna Herklots, gave a mixed reaction to the Chancellor’s Autumn Statement.

George Osborne’s decision to increase carers and disability benefits in line with inflation is welcome but more local government cuts will undermine the already creaking social care system.

Whilst most benefits for working age people will increase by only 1%, an increase below the level of inflation, carers’ and disabled people’s benefits will rise in line with inflation. Carers UK wrote to the Chancellor in September to urge him not to freeze benefits for carers and disabled people.

Responding to the Chancellor’s Autumn Statement Heléna Herklots said:

“Freezing carers and disability benefits would have piled extra pressure on carers and risked a further, very serious impact, on the ability of carers to make ends meet. It is a relief that the Chancellor has listened to these concerns and agreed that these benefits will rise with inflation.

Despite this families are still struggling with the greater costs of food and fuel. The Family Spending Report published this week by the Office of National Statistics shows that the average household costs for a family have gone up by £10 a week more than this time last year.

Carers are already seeing services in their local areas being cut back and charges for care increasing. The Chancellor’s announcement of a further 2% cut to local government spending from 2014 is disappointing and will result in even more pressure on the care system.

Although, benefits for carers and disabled people will go up a little in line with inflation, we hear from carers that the rising cost of living, care services stretched to the bone and reductions in welfare spending add up to a big on strain family finances."

Find more information about the Autumn Statement here





Today is national Carers Rights Day, when over 850 events take place across the country to give advice and information to the UK’s 6.4 million carers, 3 million of whom juggle work and care. Carers Rights Day is supported by Sainsbury's and they, along with other Employers for Carers members, are using the day to promote good workplace practices which support staff with caring responsibilities.

Caroline Waters OBE, Director, People & Policy, for BT Group and Chair of Employers Forum Employers for Carers, said: “Employers are seeing increasing numbers of key staff forced to give up work because the support they need to combine work and caring for ill or disabled loved ones just isn’t available when they need it. Demographic change means that increasingly, caring for older or disabled loved ones coincides with childcare. This poses new challenges to the productivity and economic activity of the nation - with businesses risking the loss of skills and talent and the significant investment it represents, if support at work and local services are not available to enable families to juggle work and care effectively.”

Heléna Herklots, Chief Executive of Carers UK said: “An ageing population means that caring for older or disabled loved ones is inevitable for all our families. Workplace and care services must catch up with this reality of family life. As the costs of childcare place a real strain on families’ ability to work, this research shows that finding affordable, good quality and flexible care for older parents or disabled loved ones is every bit as much of a challenge to families trying to juggle work and care.”

Carers UK is calling for urgent reform of social care funding, measures to stimulate a new generation of affordable care services, effective use of technology to help families juggle work with caring responsibilities and advice and information to ensure families can access support.

Carers UK is also highlighting the need for employers to consider flexible working packages for people with caring responsibilities. Sainsbury’s is one of just a few companies in the FTSE 100 with policies to support carers in the workplace. The company also raised £44,000 from the sale of Jubilee-themed bags for life earlier this year, to support the Carers UK Advice Line.

Justin King, Chief Executive of Sainsbury’s, who hosted the launch of Carers Rights Day said: “By working together with groups such as Carers UK, we have identified that over 20,000 of our colleagues at Sainsbury’s have caring responsibilities. We now have a carers policy, which includes offering flexible working packages for our colleagues and raising awareness in stores about carers’ rights and the practical support on offer. Creating flexible, rewarding jobs is not only part of being a great place to work, it helps us retain skilled and valuable people, which is why we’re proud to say that our turnover is currently at a record low.”



Notes for Editors:

  • Employers for Carers is an innovative and growing service for employers, chaired by BT and supported by Carers UK. Its key purpose is to provide help to employers to support the one in seven carers in their workforce. Launched in 2009 there are now 60 members representing one million employers.
  • There are a total of over 6.4 million carers in the UK today. Every year over 2 million people become carers and by 2037 it is estimated there will be 9 million carers in the UK.
  • Carers UK supports the millions of people who care for an elderly relative, a sick partner or a disabled family member, provides information and advice about caring and campaigns to make life better for carers.
  • Carers Rights Day, 30th November 2012, will see over 800 local groups across the UK running advice, information and support events. The theme this year is ‘Getting help in tough times’ – helping carers find financial help, get practical help and make the most of technology. Carers Rights Day is supported by Sainsbury’s, Tunstall Healthcare Ltd. and the Big Lottery Fund. 
  • Carers UK is also launching a new version of Looking after someone – a guide to carers’ rights and entitlements, a comprehensive guide. The guide is available free to carers who can order a copy from Carers UK’s Adviceline on 0808 808 7777.

Sandwich generation parents are emotionally and financially overwhelmed by the pressures of raising children alongside caring for ageing relatives, new research from Carers UK reveals.

Cass Business School report says care reform can act as an engine for economic growth

A fundamental shift in policy on care for older and disabled people could not only better support families in the UK, but also add significant value to the economy, according to a new report commissioned and published by Carers UK, researched and written by Professor Leslie Mayhew of Cass Business School.

The report argues that care must be accessible to all through improved integration of services in order to better support the 6.4 million UK carers. Understanding the economic costs of failures in care is crucial in reforming the current system.

Over three million carers juggle the demands of caring with maintaining a job, Cass Business School’s analysis indicates that reforming support for carers could deliver an economic and employment boost by helping keep carers in employment.

The report finds that restructuring care and reconfiguring services can help families stay in work alongside caring. This could deliver higher workplace productivity and staff retention for employers. In turn, this provides opportunities for growth in the care market, and improves the efficiency of care provision. Such reforms are made more necessary as more families are in the position of having to provide care to different generations simultaneously, the so called ‘pivot generation.’

Alongside improving support for working families, the report also points to wider economic opportunities. With provision of social care services failing to match rapid growth in demand for care from an ageing population, the report argues that stimulation of growth in care services to meet this demand could deliver a boost to GDP.

Chief Executive of Carers UK, Helena Herklots says:
"Too often the debate around reform of care for older and disabled people is framed as a drain on public finances. It is time we recognised that helping families to juggle work and care and stimulating a new generation of care services can act as an engine for economic growth."

Report author, Professor Mayhew says:

“We need to be much smarter about how care is organised and delivered – the system is fragmented and too complex. We need greater integration, better financial incentives, more flexibility, and a focus on prevention.”


The UK Care Economy: Improving outcomes for carers was commissioned by Carers UK in order to look at the various challenges that families are currently facing, with large societal changes underway and new demographic pressures, and give an independent view on the various contexts and opportunities for improving outcomes for carers.

The full report is available at



Cass Business School, which is part of City University London, delivers innovative, relevant and forward-looking education, training, consultancy and research. Located in the heart of one of the world’s leading financial centres, Cass is the business school for the City of London.

Our MBA, specialist Masters and undergraduate degrees have a global reputation for excellence, and the School supports nearly 100 PhD students.

Cass offers the widest portfolio of specialist Masters programmes in Europe. It also has the largest faculties of Finance and Actuarial Science and Insurance in the region. It is ranked in the top 10 UK business schools for business, management and finance research and 90% of the research output is internationally significant.
Cass is a place where students, academics, industry experts, business leaders and policy makers can enrich each other's thinking. For further information visit:


2012 marks 10 years since City University Business School became Cass Business School - new premises, name, and brand - the business school for the City of London.

This followed a generous donation from the Sir John Cass’s Foundation. Founded in 1748 by philanthropist Sir John Cass, the Foundation is one of London's oldest and largest education charities. Sir John Cass was born in the City of London in 1661 served as Alderman, Sheriff and MP for the City, receiving a knighthood in 1712.

Cass is marking this anniversary with a year of activities and events. The celebration will start in September 2012, which marks 10 years since Cass’s contemporary premises on Bunhill Row opened for business.

For more information see

Carers UK has responded to the Deputy Prime Minister's announcement on Government proposals to support parents juggling work and care.

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