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Record numbers of carers are missing out on vital financial support due to a lack of advice, Carers UK reveals today.

Carers UK has announced Caroline Waters OBE, Deputy Chair of the Equality and Human Rights Commission and former Director of People and Policy at BT, as its new Vice President.

House of Lords debates amendment to give parent carers equal rights to carers of disabled adults and older people

New figures on the quality of life of carers show carers feeling they don’t have control over their lives, don’t have time to do things they value and are neglecting their own health and wellbeing as a result of the care they provide.

Action must be taken to prevent rising numbers of staff quitting work because they are struggling to manage jobs alongside care for a loved one with dementia.

New research published in the Mirror today suggests that over 2000 carers have been sent court summonses for unpaid Council Tax since the changes to Council Tax Benefit introduced in April.

Carers UK warmly welcomes this morning’s announcement from the Education Secretary, Michael Gove MP, that the Government will amend legislation currently in Parliament to strengthen the rights of young carers and their families to receive support.

Carers UK calls on Government to take urgent action on contradictory benefits rules

Carers UK calls for action as poll shows lack of public awareness of care

New research by Dr Linda Pickard at the LSE published today shows that care is facing a crisis over the coming two decades.  This work serves as a stark warning to Government and society that more care must be provided or families will suffer.

Landmark report from Government, business and Carers UK argues for more support to help carers juggle work and care

Charity says recognition of carers through proposed scheme could help increasing numbers of families struggling to manage work and care responsibilities.

Carers UK has responded to today’s High Court decision to dismiss a case by 10 disabled people and their families challenging Housing Benefit cuts known as the ‘bedroom tax’

Carers UK has welcomed a Health Select Committee report published today calling for urgent action to relieve pressures on emergency healthcare.

A delegation of carers has delivered over 100 letters to 10 Downing Street from families affected by the ‘spare room’ cuts to Housing Benefit.

New Carers UK research shows Government failing to protect carers and disabled people from ‘spare room’ cuts

Carers UK has responded to the Government's Spending Review which has set out further cuts to public spending for 2015/16 and a new social care budget to be shared between the NHS and social care in England. 

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
www.carersweek.org
www.facebook.com/carersweek
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.”

-ENDS-

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.

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