ISSUE ISSUE34 34| |JULY JUNE2014 2014
Carers UK members’ magazine NEWS • CAMPAIGNS • SUPPORT • LOCAL NETWORKS
Creative writing competition p11
Facts about caring
In this issue...
Carers Week 2014 Round-up
The crippling cost of care
Quest success p10
Debt special p12
Small change big difference
Celebrating volunteers!
Collection boxes p14
Their stories p15
carersuk.org
Our journey starts here...
It takes so much time to co-ordinate all the different tasks and people involved in looking after dad
We discover problems in all kinds of places
• From research grounded in carers’ real lives • From conversations with our members • From carer focus groups • From our own experience of caring
From minor niggles to major issues.
We ask a simple question: Could a product of some kind address this problem to make life better for carers?
Yes
There’s already something out there to address this problem:
carersuk.org/technology
No
This problem is here to stay – but we’re here to talk about it and support you:
carersuk.org/support
We rack brains Our brains. Your brains. Partners’ brains. We recently formed a partnership with Tunstall Healthcare - between us we have 100 years’ experience of supporting families looking after loved ones.
We propose a solution, if we can Then comes a long journey of turning an idea into something concrete. This is the most difficult bit - it can take months or even years! This critical stage requires lots of feedback and involvement to keep the product on track
Maybe we can find a way to address this problem
It would make life so much easier if I could simply pick up my phone and quickly organise caring tasks and share them with other people involved in dad’s care What if we built an app which combines communication and organisation tools so carers can co-ordinate people and tasks at the click of a button...
...and ends with a product. Join us on a journey to find new ways to support carers Developing products is a long, complicated, and exciting journey. Whether sharing problems, sparking ideas or testing products - we need your help to develop products that will genuinely make life better for carers.
email: products@carersuk.org
Welcome Our mission is to make life better for carers:
Welcome to our new look Caring magazine, introduced by David Grayson, Chair of Carers UK. In this issue we’re looking both backwards and forwards. The challenges we currently face as carers are as pressing as any in our history, so we continue to push together for changes our founders would be proud of, such as the landmark rights we secured recently for parent carers (page 5). Our We Care. Don’t You? campaign (page 6) sends a clear message to political parties of the need to improve support for carers as we look ahead to coming elections. As we seek to expand support for carers in communities throughout the UK, we’re working through some key changes with our local groups, some of whom have been supporting carers for decades, often sustained throughout that time by a few exceptional individuals. We celebrate the life of one such carers’ champion on page 4. This issue also looks at both the ups and the downs of caring – providing a space to talk about difficult subjects such as debt (see page 12) while also celebrating how caring is a fundamental part of being human. Our article on page 8 explores portrayals of caring in literature and introduces our own creative writing competition, to be judged by an award-winning poet.
One of my primary roles as Chair is to ensure the Board of Trustees carries the voice of carers. Every year we hold elections so our members can nominate and elect trustees whose passion and caring experience can shape the development of Carers UK and ensure we remain true to our core values. It’s a big ask, but a vital contribution and I’d urge anyone with an interest in becoming a Trustee to get in touch. On page 7, one of our current trustees explain more about what the role entails. As a charity, we grow by inspiring all kinds of individuals and organisations to give their time or money to help us in our mission. I’d like to commend in particular the marathon efforts of our charity runners, see page 4. As a disabled person, I am afraid I cannot manage the marathon myself. I have though persuaded two fit young friends to run for me and together we aim to raise some funds for Carers UK’s 50th Anniversary in 2015. There’s no better time to spread awareness and inspiration than during Carers Week (page 10), where together we celebrate the contribution that each and every carer makes, raising the profile of caring and reaching out to new carers with support and advice.
We connect carers so noone has to care alone
We campaign together for lasting change
We innovate to find new ways to reach and support carers.
Join us To become a member of Carers UK T 020 7378 4997 E membership@carersuk.org
Keep in touch Carers UK 20 Great Dover Street, London SE1 4LX T 020 7378 4999 E info@carersuk.org carersuk.org Carers Scotland T 0141 445 3070 | E info@carerscotland.org carerscotland.org
In this issue... p6
We give expert advice, information and support
p12
p14
Carers Wales T 029 2081 1370 | E info@carerswales.org carerswales.org Carers Northern Ireland T 028 9043 9843 | E info@carersni.org carersni.org Carers UK Adviceline T 0808 808 7777 | E adviceline@carersuk.org
News & campaigns: We care. Don’t you? For all the latest news visit carersuk.org
Help & advice: Debt
Connecting carers: Volunteer special
Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097). Registered office: 20 Great Dover Street, London, SE1 4LX. © Carers UK July 2014
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News & campaigns Doreen Mapleson: A carers’ champion It is with sadness that we report the death of Doreen Mapleson, one of our earliest members and an influential figure in the carers’ movement. Doreen, who died in April at the age of 94, helped to establish the movement as a force in Wales. She set up the South Glamorgan branch of Carers UK (or the Carers Association as it was then) and harnessed her creativity as well as her campaigning ability to draw attention to the cause. Her booklet ‘Hiring a helper for Gran’ was published in four editions, and the sketches she wrote and starred in helped draw social workers’ attention to the reality of caring.
aid. While Doreen’s focus had been primarily on social services, the Health Board commissioned a re-make including scenes from a hospital, raising awareness of caring in the NHS.
We’ve had 18,000 new members since Doreen joined the movement – but will probably never come across a more tireless campaigner!
With a grant from the lottery, the sketches became a video, A Carer’s World, which is still used as a training
Carers UK member number 72, Doreen was honorary secretary of the Cardiff branch for 34 years. In 2007, aged 87, she spoke at a House of Lords function celebrating the founders of the carers’ movement, and the following year took a campaign about the cost of caring to the doorstep of Downing Street (see photo – Doreen is on the left).
Carer Positive
Marathon runners These five fabulous people joined 35,000 other runners in the world’s biggest fundraising event – the Virgin Money London Marathon. Carers Scotland’s Rhonda Fitzpatrick (right), had previously run a half marathon in each of the four cities where Carers UK an office. The team has now raised well over £8,000 to help us make life better for carers.
AGM & Summit Carers Scotland has launched Carer Positive, a scheme to help employers provide a supportive working environment for carers. The scheme helps Employers to identify carers in their workforce and put in place the right support to help retain staff. Find out more: carerpositive.org.uk
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Together we can make life better for carers
As members of Carers UK, you have a say in our future and a voice in the carers movement. Join us for our AGM and Summit on Tuesday 13 November, 10am – 4pm, Central London Deadline for bursary applications: Friday 8 August Deadline for non-bursary registrations: Thursday 30 October
For all the latest news visit carersuk.org
Got a local story to share? Contact comms@carersuk.org
A Carers Bill for Scotland Carers Scotland has been working with carers, carer organisations and other third sector groups to provide evidence to the Scottish Government on proposals for a Carers Bill. We support many of the proposals, which include: • to provide all carers with the opportunity to have an assessment (called a Carers Support Plan) • to ensure that carers can have an assessment even if the person they care for does not receive or want services • to ensure that carers have an emergency plan, a ‘thinking ahead’ plan and can move smoothly through transitions between services • to place a duty on local authorities to establish and maintain an information service for carers and young carers • to include adult carers in the planning, delivery and shaping of services • to place a duty on local authorities and health services to involve
carers in planning care for the person they look after and shaping the support they need to manage their caring role. We’re calling on the Scottish Government to strengthen the legislation by: • providing support to carers identified by their assessment • involving carers in hospital admission and discharge • requiring GP practices to develop a register of carers, proactively refer carers for assessment and support, and record this information on each individual’s patient record. Consultation responses are currently being analysed and a summary report is due to be published in the autumn. For more information visit carerscotland.org/policy
Strategic partnerships Carers UK chooses partners to help us reach areas of society that we can’t get to on our own, identify and seek solutions to problems faced by carers, and fund our work so that we can improve and expand our services and help more carers. We are delighted to announce a new partnership with Sanctuary Supported Living, who has previously supported Carers Week. We are also continuing our work with Nutricia to highlight the importance of good nutritional care for carers and the people they are looking after.
Good company? Know a company who might raise money or awareness for Carers UK? Give us a shout!
Success for parent carers In February we celebrated an amendment to the Children and Families Bill which marks a real victory for parent carers in England, who joined us in a long and hard campaign.
@carersuk
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Because of these proposed changes, local authorities will now have a duty to promote the wellbeing of parent carers when they look at the needs of families with disabled children.
• posing Parliamentary questions • holding media interviews • orchestrating letters from carer and disability charities services.
The campaign saw us: • working with MPs and Peers to argue in debates on both the Care Bill and the Children and Families Bill • attending meetings with Ministers in both departments. • gathering evidence from our members
For a long time it looked like parent carers would be left behind with lesser rights to assessment and support so we are delighted that the Government has listened and is taking the opportunity to recognise the huge impact that caring for a disabled child can have.
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News & campaigns Royal Assent for Care Act A new law making major changes to the way social care is delivered and funded in England has finished its final stages in Parliament. The Care Act 2014 modernises and reforms social care law and puts in place a cap on the amount an individual pays towards care costs. Importantly, the Act strengthens the rights and recognition of carers in the social care system, including, for the first time, giving carers a clear right to receive services. Carers UK has welcomed the changes as delivering the strongest rights for carers yet. The ‘Royal Assent’ means that the new legal framework and these new rights will come into force in April 2015. Many of the details about the new legislation will be set out in the regulations and guidance for local authorities. The Government is consulting on drafts of these over the summer and will publish the final regulations in October. We will respond in full to the consultations and publish our evidence alongside guides to the new legislation in the autumn. Read our briefing on the Care Act in our policy library: carersuk.org/policylibrary
We care. Don’t you? Following our Caring & Family Finances Inquiry, we launched We care. Don’t You? – a campaign to draw attention to the fact that many carers are already struggling to cope and now face unprecedented cuts to vital support.
It is time for action. We’re calling on all political parties to: Stop cutting carers’ support Carers need more help, not less – yet we face cuts to vital care services and benefits. End carers’ financial hardship Caring shouldn’t push families into financial crisis – we need urgent reform of carers’ benefits. Prevent carer breakdown Health and care services must act to prevent carer ill-health and isolation.
What sort of support could you give our campaign? • Contact your MP or political representatives • Tell your story to the media • Take part in a protest or day of action • Share campaign items on Facebook or Twitter • Make a donation More than 2,000 people have got involved so far. If you’d like to join them on the carers’ campaign visit: carersuk.org/wecare In the next issue of Caring magazine we will publish more information about the next steps for the campaign.
Donate If you want to make a donation to support campaigns like We care. Don’t you? please complete the form at the back of the magazine. Alternatively telephone 020 7378 4988 or donate online at: carersuk.org/donate. Because we can’t do what we do without you.
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Bushra is my sister, my mother. She is everything to me. Talat (above right) talking about her sister, Bushra, whose story is at the heart of the campaign
For all the latest news visit carersuk.org
Q&A
Interview
Catherine Bingham Carers UK members play a huge role in electing and serving on the Board of Trustees. We ask Catherine Bingham what being a trustee is all about. Why did you become a trustee? Fighting ‘The System’ on your own is not ideal and I thought it better to become involved in an organisation speaking out for carers’ issues.
Laughter is often required when tense situations occur especially whilst discussing challenging issues. I have never yet been evicted but then, if I was, I reckon most of the Board would have to leave with me.
How do you bear the responsibility? Coming out of my comfort zone into this new arena has certainly been challenging, however, I have been greatly supported throughout by staff and fellow board members. My confidence has grown as a result.
Are you full-board or half-board? Are the sandwiches good? I think the phrase could be ‘All aboard’. I think of my train journeys to London, meeting up with fellow members at the hotel, sharing tales and experiences before the busy day ahead. Before I know it, I hear the ‘all aboard’ whistle of my train back to Scotland. Thankfully all modest expenses of travel and accommodation are met by Carers UK.
Have you ever looked around the Board meeting table and wondered how you got there? Truthfully, yes, especially when I first joined the board as everyone seemed to have differing skill sets and experience. However, I soon learned that although we all had varied backgrounds, we all shared the same passion to improve carers’ lives. What have you learned about Carers UK? I quickly learned that the organisation is very carer-focused, listens to its members and gives due diligence to running the charity effectively to achieve its goals and objectives. Have you ever laughed during a meeting? Were you evicted?
Have you ever had something important to say but bottled it? There is a positive culture to encourage and promote questions on all aspects of the business no matter how ‘simple’ they may seem. The chair provides every opportunity for clarification on any issues. How important is it that there are carers on the Board? Carers have come through the hard knocks of accessing the system of health and social care. We know what is not working and have a good idea of what is needed to change. We are therefore able to drive forward the aims and objectives of the organisation. Everyone is valued
for their insight, respected for their contribution and encouraged to participate on equal terms. If anything, the contribution of Board members with direct caring experience is particularly prized. Does everyone on the Board have a particular role? Everyone on the board is encouraged to participate and use their skills, experience and knowledge. I elected to go onto the Governance and Constitution Committee; most of these meetings are provided through teleconferencing and do not require me to travel to London. Some people are co-opted for their finance and fundraising expertise. What’s missing from the Board? Looking ahead to the Board elections and to achieve a good balance of skills, knowledge and experience, we require people who have complementary skills such as fundraising and also more people from diverse backgrounds would bring additional dynamism to the board.
Could you join the Board? If you’ve been inspired by Catherine’s account of life at the heart of Carers UK, then you might consider joining the Board of Trustees yourself. Nominations are now open. There are lots of ways to get involved in Carers UK (see page 14) and being a trustee is a big commitment. Previous experience of Boards and committees is @carersuk
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helpful but isn’t essential if you’ve got the skills and the passion to help us make life better for carers. Further information about becoming a Board member is enclosed with this magazine, or you can contact the Company Secretary by email: david.rouane@carersuk.org or calling 020 7378 4945.
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Connecting carers
Being Human Award-winning poet Cheryl Moskowitz introduces the first Carers UK creative writing competition and takes us to the core of human experience.
About: Cheryl Moskowitz Cheryl Moskowitz was born in Chicago, Illinois and moved to the UK in 1970. She studied Psychology at Sussex University and has worked as an actor, performance poet, therapist, writer and translator. She was a co-founder of LAPIDUS, the Writing for Wellbeing organisation, and taught on the Creative Writing and Personal Development MA at Sussex University from 1996-2010. She has won the Bridport Prize, 2010; Troubadour International Poetry Prize, 2010; the International Hippocrates Prize for Poetry and Medicine, 2011; Kent and Sussex Poetry Prize, 2013; and the Magma Editors Poetry Prize, 2014. Publications include novel Wyoming Trail, poetry for children Can it Be About Me?; and poetry collection The Girl is Smiling.
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I am delighted to have been asked to judge the first ever Carers UK creative writing competition. In recent years I have had the privilege to meet and work as a writer with carers in a variety of different settings; young carers, adult carers, parent carers. I have always been struck by levels of tolerance and compassion required in those roles and the ways in which the ordinary meets the extraordinary in their daily lives. My father had Alzheimer’s for the last seven years of his life during which time I visited him as often as I could in the care home where he lived in San Francisco. The time I spent with my father, though often difficult and emotionally challenging, also became a great source of inspiration for my writing. Carers, it seems to me, are much better placed than most, to understand those qualities that lie at the very core of being human; strength, vulnerability and need, which are qualities, after all, that any good writing ought to be able to reflect. I have just been reading some of the poems and stories in Living in the Land of Limbo (ed. Carol Levine,
Vanderbilt University Press 2014) an American publication which claims to be the first anthology of short stories and poems specifically about carers. The book includes sections on Ageing Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers and Friends. A final section is devoted to paid caregivers and their clients. Many, but not all, of the authors are well-known US poets and writers. When I was a child I remember reading the book Heidi by Johanna Spyri. I read it again to my children when they were young. The different caring relationships in the book, providing windows into parental loss in childhood, aging and disability, are deeply memorable and touching. I’m sure there are many other classic examples but oddly, it is quite difficult to bring many to mind. The role of the carer can be all consuming. Perhaps that is why there is not nearly enough literature on the subject. Could it be that carers put all their creative energy into their caring role leaving the world bereft of the poems and stories they might have to tell? It is time to change all that. Get writing!
For all the latest news visit carersuk.org
Connect with real carers online: carersuk.org
Carers UK creative writing competition 2014 The first ever Carers UK creative writing competition is now open for entries! We would love to hear from you whether you’re an experienced writer or someone who has never written a poem or short story before. Our theme is family, friends and caring and we have separate competitions for poetry* and short stories**. Prizes include a year’s free membership of the Poetry Society. Open to everyone, the competition is a great opportunity to raise awareness about caring. The Poetry Society will be promoting it widely, so please do spread the word among your own networks. We will publish the winning entries on the Carers UK website in the autumn and, depending on the number of entries, we hope to produce an e-book featuring a selection of the poems and stories. Let’s get writing! Please make sure poems are no longer than 40 lines and short stories are no longer than 1,000 words. Entries must be unpublished, in English, and not a translation of another author’s work. It will not be possible to revise your poem or short story after you have submitted it.
The role of the carer can be all consuming. Perhaps that is why there is not nearly enough literature on the subject Cheryl Moskowitz Poet
@carersuk
Email your entry as a Word document attachment to writingcomp@carersuk.org The Word document should not contain your name or contact details, but in your covering email please provide your name, email address, phone number, postcode, the titles of entry and the category you are entering. Alternatively you can post your entry to us at: Creative Writing Competition Carers UK 20 Great Dover Street London SE1 4LX Please remember to put your contact details, category and poem titles on a separate page. If you have any questions about the competition, please send an email to writingcomp@carersuk.org Closing date: Friday 1 August 2014 * up to three poems submitted ** one story of up to 1000 words
Reading inspiration for carers: Living in the Land of Limbo
The Visit Some days I find him asleep in his chair head hung as though bashful or ashamed. Something gentle in his breathing undisturbed so that to disturb it would be like a cruel wind come to unsettle the peace of things. Or stir the bedside bliss of simply being here where all remembering is a thing of the past. Best to remain unannounced to rest nestled against his large shoulder. To lay my worn hand over his soft as a baby’s and feel how such a deep sleep smoothes out the wrinkles. Just at the moment time began slipping away that was the moment he asked me Don’t you have anyone you can talk to? I had been holding his hand all day. Do you want me to go? Amazing how everything - the tufts in his nose his ears the hair he has left on his head and beard has all dissolved into white except for his brow - the one place the colour never faded still red with consternation. No he says I don’t want you to go. It’s just that - he looks troubled. I’m not sure I can help you. Today a woman called Sylvia wants to leave. She is saying this as I arrive and my father is turning the page of a newspaper. I can’t stay here says Sylvia. She is wearing her coat and carrying her handbag. Can someone call me a taxi? – Sylvia asks for taxis the way my father turns the pages of the paper. She says her son is expecting her, that he will be here soon. My father peers through his glasses at the newsprint while the nurses tell Sylvia she should sit and wait. The nurses tell Sylvia that her son has telephoned. I have a son? Sylvia is surprised. She sits down like they asked her to. My father raises his head noticing I am here and looks as if he means to discuss with me something that he has just read.
Cheryl Moskowitz
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Connecting carers Carers Week: wake up call on unpaid caring
and work to build a better life for them and their families. Martin Baker I pledge to spread the word about Carers Week, and to do all I can to better support my best friend.
This year’s Carers Week was both a celebration of the contribution of carers throughout the UK and a wake-up call over public ignorance of caring as a social issue.
Pledges
Events More than 12,000 events took place in local communities throughout the UK as part of the Carers Week Quest, the biggest ever drive to reach out to hidden carers. Ranging from coffee mornings and cream teas to countywide information campaigns in pharmacies and libraries, the events focused on raising awareness of caring, highlighting local support and promoting health and wellbeing. Islington Carers Hub brought MPs (including former carers, Emily Thornberry MP), councillors and senior NHS and local authority staff together with carers to discuss how they were going to raise awareness of caring and provide better services for carers. Carers at Islington Carers Hub also took part in a Laughing Yoga Workshop, enjoying the restorative and very portable power of laughter.
More than 1,300 individuals, organisations and political figures made pledges as part of the Quest, responding to the challenge of reaching out to carers with information, support and services. Here are a few: Vanessa Hardy I pledge to support carers and their families and friends by offering emotional support. I want to listen and understand how they feel and show them they need not be alone.
Rt Hon Nick Clegg MP We pledge to extend carers’ rights to assessments to enable them to access an assessment of their needs for support. Health and Social Care Board (NI) The identification of carers and the uptake of carers’ assessments are now a ministerial target and a priority for the Board this year.
Amy Cook I pledge to distribute resources in my community in order to guide local carers to support. Rt Hon Ed Miliband MP I’m very proud to support Carers Week. I am determined to listen to carers’ concerns
As carers, we go through a great deal. We must talk to each other, get support from each other. Carers deserve support. We’re hidden in so many ways, and it’s about time we weren’t. Emily Thornberry MP and former carer
For all the latest news visit carersuk.org
Send in your Carers Week 2014 stories to carersweek@carersuk.org Facts about caring
Media To mark the start of Carers Week, we worked with eight other charities to publish new evidence on the extent to which caring is hidden from the public eye. The poll, gathering the views of the UK public, highlighted a serious lack of understanding about just how many people have caring responsibilities. The results also showed that the vast majority of non-carers believe that caring will not affect them. But, asked to imagine they had to care for a loved one, members of the public expressed serious concerns about how they would cope. Together with our Carers Week partners, we’ve tried to bring caring right out into the open by raising awareness locally and nationally. Among the highlights was a Metro focus calling for more recognition and support, featuring one of our ambassadors, Antonia Kadri, as well as our Chief Executive, Heléna Herklots. Another ambassador, Amy Cook, told her story on ITV’s Loose Women to raise awareness. Over the course of Carers Week, carers also shone a light on the lack of support available, highlighted what good support looks like and drew attention to challenges faced by working carers and young carers. We’re looking to harness momentum from Carers Week to keep reaching out to carers in local communities and ensure no-one has to care alone. Turn over for ways you can help.
This survey is a wake-up call, clearly and alarmingly showing that as a society we need a much wider understanding of the realities of caring. Heléna Herklots Chief Executive
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Being with other carers and realising that there are lots of people out there in similar situations was both overwhelming and empowering. Antonia Kadri Carers UK Ambassador
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Help & advice
Debt Hidden Issues:
Sometimes it’s hard to admit we’re not coping, because we think everyone else is doing fine. With 6 out of 10 carers having faced debt because of their caring role, it’s time to break the silence.
When caring affects families, it’s all too easy for carers to face financial pressures and crisis as they are often forced to reduce hours, or give up work and face the extra costs of disability and ill health. Our recent ‘Caring and Family Finances Inquiry’ Report, showed the costs faced by families with caring responsibilities – including higher spending on typical household costs such as utilities, food and transport as well as the costs of disabilityrelated spending, from care services and equipment to cleaning products and home adaptations. These pressures are all the harder given the cuts to services and benefits that many families are experiencing. This can result in lasting financial hardship and debt, often made worse by delays in getting the right financial support and advice.
she had to give up work. In order for me to keep my job, we had to start buying in significant amounts of care. I contacted social services to ask for help, but nothing was forthcoming. My plan was to get to the age of 60, which was only a couple of years away, and then retire on a decent pension and everything would be OK. Then a few things happened which weren’t part of the plan. I’d borrowed money against our house in order to cover the care costs, which were weighing in at around half my salary. Essentially, I didn’t want to admit that I couldn’t cope. It was only supposed to be a stop-gap – I was fully expecting to get a bonus from a big IT project I was working on. When the contract went south suddenly, I had no way to pay back that loan.
I had a well-paid job in a major IT company. My wife was working too – we owned our own home and could go on holiday every year, eat out a couple of times a month and have a reasonably comfortable lifestyle.
My wife’s health deteriorated further and she started to need more help. We couldn’t have afforded nighttime care even if we’d wanted to – but after a while I started to struggle. Eventually I collapsed under the strain of worrying about work, money and my wife’s health, on top of the physical exhaustion. My own health hit the floor and I ended up in hospital.
When my wife’s MS advanced much more quickly than we’d expected,
At the hospital, I sought advice about work-life balance. My plan
Norman’s Story
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shifted to early retirement topped up with some consultancy work to make ends meet. This was perfectly achievable. Then my wife had an accident and needed 24-hour care. When she started to recover and was well enough for me to look for work again, I had an accident myself and was laid up for a while. Before I knew it, I was a 58-yearold in a recession who’d been out of work for over a year in a fast-moving industry. I couldn’t make it work. I went to the Citizen’s Advice Bureau to go through the finances, which resulted in signing up to a mortgage rescue scheme. That didn’t keep a couple of credit card companies at bay though. This affected my credit rating which in turn made it even more difficult to find work. Once we’d run out of money, suddenly all the help seemed to become available and we were able to get things back under control. It’s not back to how it was before, by any means. We don’t own our house, we don’t really go on holiday, we rarely eat out. But we don’t owe anything and we make ends meet. I felt humiliated more than anything else, that it could all come unglued as easily as it did. And frustrated. A little bit of help early on could have made all the difference.
For all the latest news visit carersuk.org
Worried? Our expert advice is only a phone call away: 0808 808 7777
Expert comment Get help If you are struggling with your debts, contact a free, independent debt advice charity such as Debt Advice Foundation. Their helpline is 0800 043 40 50 or you can go to debtadvicefoundation.org
David Rodger, chief executive of national charity Debt Advice Foundation, said: “If you have outstanding debts, you must do something about it now – delays will only make things much worse. People often don’t know where to start, so the best way is simply to pick up the phone to a debt charity. You can call us on 0800 043 40 50, for example. “A charity debt adviser will help you make a financial statement, explain about priority debts and give you clear options. They will advise on the best way forward and how to communicate with creditors. But you have to take the first step – ask for help, and take the first step to recovery”.
But you have to take the first step – ask for help, and take the first step to recovery David Rodger, Chief Executive Debt Advice Foundation
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How you can help Gifts in memory Donating or arranging a collection in memory of someone special is a positive way to remember them and celebrate their life. When Brigid Simpson died from cancer at the beginning of this year, her family made the very special decision to ask for donations to be made to Carers UK in lieu of flowers at the funeral: “We chose to support Carers UK because, even though we have had a tough six months throughout Brigid’s illness, we recognise that many others will not be as fortunate as we have been. Many people devote their lives to caring for others and do not have the extensive resources, love and support from friends and family that we’ve enjoyed. We chose to support Carers UK because they provide support where it is most needed.” – Paul Simpson, Brigid’s husband Donations in memory of Brigid didn’t stop there. Family and friends rallied round to organise a quiz supper evening, Pilgrim Challenge and Ultramarathon. And four very brave people took on the infamous Tough Mudder in Brigid’s memory So far, more than £10,000 has been raised in celebration of Brigid’s life – a wonderful tribute to a special person.
We chose to support Carers UK because they provide support where it is most needed.
Sumatra trek 2014 will see Sue Fletcher-Jones really push herself to the limits to raise valuable money for and awareness of Carers UK. In September, Sue will travel to Sumatra, Indonesia to begin a six-day trek through the mountainous jungle of the Gunung Leuser National Park. This would be a demanding feat for most people, but Sue also has the added challenge of living with Fibromyalgia – a long-term condition that causes widespread pain in the body as well as a multitude of other symptoms, including fatigue. However Sue will not be deterred and even started training early to make sure she manages the extra demands that training will put on her body. Sue is a full time carer for her 12 year old son, who was diagnosed with Pathological Demand Avoidance Syndrome, which is on the Autistic Spectrum, at the age of four. The demands of caring means that Sue was eventually forced to give up her full-time job as an Assistant Psychologist: “I have been a single Mum for the last six years. Caring has been stressful and I have suffered with depression on and off over the years. It can be very lonely and isolating. However it can also be very rewarding and I have made some great friends who are also carers.” If you’d like to support Sue’s fundraising efforts by making a donation, visit justgiving.com/Sue-Fletcher-Jones1 or text SUFJ67 followed by the amount (e.g. SUFJ67 £5) to 7007.
If you want to help make life better for carers by donating or raising money in memory please get in touch. You can order collection envelopes for a funeral or remembrance service or create an online tribute fund. Please contact 020 7378 4988 or email: inmemory@carersuk.org
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For all the latest news visit carersuk.org
Inspired? Find out more: carersuk.org/how-you-can-help
Celebrating volunteers During Volunteers’ Week (1–8 June) we paid tribute to the individuals who give their time, skills and understanding to help support and reach out to other carers. With 6,000 people becoming carers every day, it’s a real challenge to ensure that every one gets support and advice from the start. Thanks to our volunteers, we stand a chance. Building local networks, distributing resources, maintaining information systems, supporting online communities, talking to the media – volunteers help in all kind of ways to connect with other carers and raise awareness of caring.
Volunteer experiences Freda has been volunteering as a Carers UK Local Ambassador in Thamesmead, Greater London since November 2013. As a Local Ambassador, Freda works in her community to support carers at a local level and raise awareness of Carers UK and other local services. Peter used to care for his wife, and has volunteered on the Carers UK Adviceline since March 2014. His role involves offering listening support to people call the Adviceline, as well as booking call-backs for carers who need advice from one of our trained advisers. Michael is one of our longest serving volunteers. He has helped out in the Advice and Information team for the past ten years, sending information packs out to carers and making sure our records are up to date. Sue has volunteered for Carers UK for four years, firstly as a media volunteer and then as a forum moderator, helping to create an online community where carers can talk about real issues with people who understand.
I felt empowered and motivated by meeting other carers Freda McEwan Carers UK Local Ambassador
Volunteering has helped me get my confidence back
Peter Hicks Carers UK Adviceline volunteer
I saw volunteering as an opportunity to reinvent myself Michael Crabbie Carers UK A&I volunteer
I wanted to give something back to the community that supported me when I needed it
What could you do? If you can draw on your experience of caring to help us reach out to carers in communities throughout the UK, please contact: volunteering@carersuk.org
@carersuk
/carersuk
Sue Cuomo Carers UK Forum moderator
I looked after my mother for three years. Caring took over my life, and resulted in me giving up my job. At times it was very lonely, exhausting and sad. But I had amazing support from family and friends, care workers and other services and professionals. After my mother died I wanted to do something to help people who were in a similar position. I found out about volunteering for the Carers UK Adviceline and applied. My role involves answering the phone one morning. I support the people who call by listening to them talk about their situation, and then seeing how Carers UK can help. The callers are often surprised that someone is actually taking the time to listen. The thanks and the laughs are amazing. I am constantly overwhelmed by what a tough job people have to deal with day in and day out, but also by how generous and giving so many people are. It’s very humbling. Joanie Speers Carers UK Adviceline volunteer
Events Calendar
Places available!
Sunday 7th September 2014 Great North Run Sunday 12th October 2014 Royal Parks Half Marathon Sunday 15th March 2015 adidas Silverstone Half Marathon Sunday 12th April 2015 Brighton Marathon Sunday 26th April 2015 Virgin Money London Marathon If the event you’d like to do isn’t listed here please get in touch. We’d love to support you! Email fundraising@carersuk.org or call 020 7378 4986
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Inspired? Find out more: carersuk.org/how-you-can-help
We couldn’t do what we do without you… Special thanks to the following supporters who have raised money and awareness for Carers UK so that we can continue to make life better for carers.
Collection boxes Collect for Carers UK and help make life better for carers. Small change can make a big difference. And collecting for Carers UK is not just a great way to raise vital funds, it also helps to raise awareness of the work that we do and the services we offer. To order materials for collecting in your local community, at an event or even at home for your own small change, please use the form at the back of the magazine.
Clyde Fernandez and Salesforce
Alternatively call 020 7378 4986 or email: fundraising@carersuk.org
Tenacious Clyde Fernandez arranged a London to Brighton cycle and recruited 30 of his Salesforce colleagues to join him! In total they’ve raised over £4,000 to help us make life better for carers, so huge thanks to the team! Clyde’s wife is a full time carer for their son, who has autism, so the cause is very close to his heart.
Amelia Butcher Huge thanks to Amelia Butcher and her fellow pupils at St Catherine’s School in Twickenham who held a cake sale which raised over £250 for Carers UK. They also held an assembly focused on how Carers UK supports carers across the UK.
Claire Ramsay On Sunday April 6th our marathon blogger Claire Ramsay finished the Brighton Marathon in under 5 hours! An amazing achievement considering that she had been injured in the run up to the marathon and the furthest she’d run in training was 9 kilometres! Claire’s mum has cared for her nan for the last 15 years.
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Everyone can leave a legacy Gifts in wills, however big or small, help us to plan for the future. We couldn’t do what we do without them. To find out more about leaving a gift to Carers UK in your will, please get in touch using the form on the reverse of this page. For all the latest news visit carersuk.org
Please help us make life better for carers Just fill out this form and pop it back to us in the Freepost envelope provided. Alternatively, return to Freepost RRYCLTCB-GTHC, Carers UK, 20 Great Dover Street, London SE1 4LX. Your details First Name
There are many ways you can help us make life better for carers. Please tick the boxes that interest you and we’ll send you more information.
Surname
Address Postcode Telephone
I’m interested in having a collection box
I want to give a regular gift to help carers get the support they need right from the start. I would like to make a regular donation of £3
£5
£10
Other: £
Monthly / Quarterly / Annually*
Instruction to your bank or Building Society Please pay Carers UK Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Carers UK and if so, details will be passed electronically to my Bank/Building Society. INSTRUCTION TO BANK/BUILDING SOCIETY TO PAY BY DIRECT DEBIT
Originators ID: 760184
Name(s) of account holders(s) Sort Code
Account Number
Signature(s)
Date
I would like to make a donation of £25
£50
Other: £
Please find enclosed my Cheque
Postal order
Charity voucher
Please make payable to Carers UK
Or please debit my Visa
Mastercard
Maestro
CAF Charity Card
Card No. Security Code
Issue No. (last 3 digits on reverse of card)
Valid
Signature
Expires Date
I would prefer not to receive a thank you letter
Thank you. We couldn’t do what we do without you. Make your gift worth 25% more, at no extra cost to you! I confirm that I am a UK taxpayer and would like Carers UK to reclaim the tax on any of the donations I have made in the last four years and any future donations I may make.** Signature:
I want to arrange a collection in memory of someone special Send me a fundraising toolkit I’m interested in donating through my payroll I’d like to become a member of Carers UK
I want to make a single donation to help carers get the support they need right from the start. £10
I want to help Carers UK
I’m celebrating this year and want donations to be made to Carers UK I want to take part in an event I’d like more information on leaving a gift in my will My company wants to raise money I’d like more information about volunteering with Carers UK
Date:
* Please delete as appropriate. Donations will be taken on or around the 24th of the month. ** I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand Carers UK will reclaim 25p of tax on every £1 that I give. Please let us know if your tax circumstances or name and address details change so that we can update our records.
Interview
I care Prabhudas, 69, and his wife Minaxi, 62, care for their daughters Bhavini and Meeli who both have severe learning difficulties.
Our first daughter was wrongly diagnosed with cerebral palsy. Doctors said we would be fine to have another child. When Meeli was also born with disabilities we had to take the girls for many tests. When we became carers we were completely isolated and cut off from the local community. There was no support from family. We first came into contact with Carers UK over 25 years ago, after a physio told us about the organisation. Local services for adults with learning difficulties are getting harder to find. The girls both go to day centres during the week, but there’s nothing for the girls at the weekend or after school. It can be very, very difficult dealing with the girls. As they get older their behaviour has become more challenging. And as we get older it gets harder for us too.
younger daughter because she wakes so frequently at night. For many years I worked for Ford, juggling care with nightshifts on the assembly line. Later I spent 10 years working for a local befriending charity for older people. I retired a couple of years ago and now spend much of my time supporting other carers. I am a Carers Champion in Newham. Being a carer has taught me to accept situations. I have learned how to cope but also how to try and help other carers overcome the loneliness and isolation that comes with caring. Carers face real challenges. So many don’t know what support is or where they should look for it. We need to help carers get the information they need and it is important they have somewhere they can go and a way to talk about their problems.
We’ve been married 38 years – but we rarely get time together. It’s hard enough getting out as a family. We don’t get to go out on our own. My wife still works as an assistant at the special needs school the girls went to when they were young. Her health is not so good now, she has real problems with her knees. For the past year she has been sleeping in the same room as our
Making life better for carers: carersuk.org
Being a Carers UK ambassador means I can help to improve the life of carers. To make professionals understand what carers are going through, to encourage them to listen to carers, to try and meet them and to understand their needs.” Carers should be recognised as individuals and help should be available to make our lives easier, to help us not only to cope with our situation but also so we can live a normal life. Prabhudas Tanna is a GP Carer Ambassador for Carers UK in Newham, East London. If you would like to get involved in our Ambassador programme or help us reach out to more carers, visit carersuk.org/connect or call 020 7378 4999