Caring March 2014
CARERS UK the voice of carers
The magazine for members of Carers UK
r e n r o c r u o y g in t h ig F
News
Caring
Call for paid ‘care leave’
Carers UK is a charity set up to support the millions of people who care for an elderly relative, a sick friend or a disabled family member. We help carers. When caring affects you and your family Carers UK is here for you.
Carers UK • supports carers and provides information and advice about caring • influences policy through our research based on carers’ real life experiences • campaigns to make life better for carers.
CARERS UK 20 Great Dover Street, London SE1 4LX Tel: 020 7378 4999 Fax: 020 7378 9781 Email: info@carersuk.org www.carersuk.org
CARERS UK OFFICES Carers Scotland Tel: 0141 445 3070 www.carerscotland.org Carers Northern Ireland Tel: 028 9043 9843 www.carersni.org Carers Wales Tel: 029 2081 1370 www.carerswales.org
JOIN US To become a member of Carers UK 020 7378 4931 Email: membership@carersuk.org
Carers UK, backed by journalist Jackie Ashley, has launched a campaign for statutory paid leave for carers. We are calling for a legal right to a minimum of five days paid ‘care leave’ and for a debate on rights to longer periods of leave to care for loved ones. Jackie Ashley is leading calls for new rights after her own experiences taking time off work to care for her husband, journalist and political commentator Andrew Marr, who suffered a stroke. Jackie Ashley said, “Just as maternity leave once seemed unthinkable but is now widely accepted, so the right to care leave needs to become part of the pattern of employment. It is madness that so many carers lose their jobs for ever.” A YouGov opinion poll, commissioned
by Carers UK, showed overwhelming public backing for the change – with 9 in 10 supporting the call for a new right to short periods of time off work to care. The UK is falling behind globally, with ‘care leave’ policies already introduced in countries across the world including Germany, Canada, Japan, Australia, France, Italy, USA ,Belgium, Poland, Ireland, Taiwan and the Netherlands. Currently workers with caring responsibilities only have rights to unpaid ‘emergency leave’, usually limited to a day or two if a loved one has a crisis. Carers UK says this is failing families and businesses. Our evidence is published in a report, 'The Case for Care Leave' as part of Carers UK’s Future Care series.
CARERS UK ADVICE LINE 0808 808 7777 Wednesday and Thursday 10am-12pm and 2pm-4pm
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).
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New Vice-President Carers UK is delighted to welcome Caroline Waters OBE as a new Vice President. Caroline was founding Chair of Carers UK’s business forum, Employers for Carers. Formerly Director of People and Policy at BT, she is now Deputy Chair of the Equality and Human Rights Commission. We're also pleased to announce that our retiring Chair Don Brereton, CB has agreed to become a Vice-President. Vice-President is an honorary position which is offered to individuals who have significantly contributed to furthering the carers’ cause through their work, who have achieved distinction in public life, and who wish to assist Carers UK in achieving our goals. Our other Vice-Presidents are Rt Hon the Baroness Bottomley of Nettlestone, DL, The Baroness Flather, DL, Dr Hywel Francis MP and our former Chief Executive The Baroness Pitkeathley, OBE.
www.carersuk.org CARING 3
News
Scotland: Carers’ parliament Carers from across Scotland travelled to Edinburgh for the second Carers Parliament for a day of debates around the theme “Your Rights”. Almost 200 delegates attended, including Carers Scotland members, who heard from speakers including the Minister for Public Health, Michael Matheson MSP . A popular speaker was carer Sharon Coleman, who shared her story of how she fought for and won landmark rights for carers in the workplace. One carer said they had, “enjoyed hearing Sharon's story. Very inspirational.” The delegates also had a lively debate on the topic “Should the priority be to publicise and enforce existing carer rights rather than create new rights?”. Many talked about their experiences of finding out about their rights and of actually accessing them.
First Minister Alex Salmond also attended the event to announce plans for specific legislation that will promote, defend and extend the rights of carers and young carers across Scotland. Simon Hodgson, Director of Carers Scotland, said the announcement marked “another important milestone in recognising the crucial role carers play in homes across the country. It was good of the First Minister to take time out and to bring along a new statement of intent, which I hope he will uphold. I am pleased that one of the manifesto commitments is the reshaping of care for older people who are in a caring role.” Carers Scotland will be working with the Government as its consultation begins and will be providing briefings and opportunities for carers to get involved. A report from the Carers Parliament and a film of the day will be available on the Carers Scotland website in early 2014.
PM wrong again on ‘bedroom tax’ exemption Carers UK has come together with 18 charities to write to the Prime Minister after he once again claimed, incorrectly, that disabled people were exempt from Housing Benefit ‘bedroom tax’ changes. In a Parliamentary debate in late November the Prime Minister said the Government had exempt disabled people who needed an extra room, echoing comments he made earlier in the year that disabled children and people needing round the clock care were not affected.
Our letter tells the Prime Minister “we were deeply disappointed by your remarks in the House of Commons.” It goes on to say “We are now even more concerned that the effects the policy is having on disabled people and their families are not understood in Government.” The letter highlights to the Prime Minister the confusion caused “when senior Government figures state that these families are exempt when they are not, our organisations have to respond to the false hope this generates. We receive
the relieved calls and messages from families who are struggling to pay their rent shortfall, and it falls to us to tell those families that they are, in fact, subject to these cuts and are not exempt.” The letter, also signed by charities including Disability Rights UK, Rethink Mental Illness and RNIB, repeats calls for urgent action to deliver exemptions for carers and disabled people, arguing that the Government’s discretionary fund for disabled people affected is inappropriate and inadequate.
Northern Ireland: Walk in my shoes Carers Northern Ireland held their annual summit and conference in Ballymena in October 2013. Carers UK Chair Don Brereton set the scene by highlighting some of the key challenges and opportunities for carers and social care across the UK. Amongst the workshops and speeches was a thought-provoking presentation from Dr David Sheard who set out new ways of thinking about dementia care. Using powerful films he demonstrated that how you make people feel is the most important aspect of dementia care. Quoting Maya Angelou he said: “People will forget what you said. People will forget what you did. But people will never forget how you make them feel.” Carer Esme Charles spoke with passion and honesty about the impact caring has had on her life. She has looked after her husband Dennis for over 40 years. For many years they were in denial about his condition – Esme spoke of how 'no one had invited this intruder into their lives' and how as a carer she had become isolated from her friends. She ended with a poem asking people to walk in her shoes. “I’ve never worked as hard in all my life. I’m a loving, caring, dutiful wife. Please walk in my shoes, to see what I do. I can’t believe it and neither would you.”
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Quality of life? New figures on quality of life show carers feel they don’t have control over their lives, don’t have time to do things they value and neglect their own health and wellbeing as a result of the care they provide. The new NHS statistics come from a survey of people providing unpaid care to adults in receipt of Social Services during 2012-13. A massive 78% of carers said they don’t have enough or any time to do things that they value and enjoy. Less than a third said that they had the control they wanted over their everyday life. Nearly a quarter reported suffering from a longstanding illness and a fifth stated they have a physical impairment or disability.
News
Record 360,000 carers miss out on £1bn allowances Record numbers of carers are missing out on vital financial support due to a lack of advice. Research published by Carers UK to coincide with Carers Rights Day in November, shows the total of value of unclaimed Carer’s Allowance has risen to over £1.1 billion as over 360,000 full-time carers miss out. In a survey of over 3,500 carers, 4 in 10 said they had missed out on financial support as a result of a lack of advice and information. Almost 6 in 10 of those missed out for more than two years – resulting in the loss of thousands of pounds in income. With rapidly rising costs of living hitting caring families hard, Carers UK says a lack of financial support is putting carers at risk of long-term debt and financial hardship. Heléna Herklots, Chief Executive of Carers UK said that financial pressure is “all too often exacerbated by a lack of advice for carers leading to long delays in them accessing essential support like Carer’s Allowance. It is vital that anyone caring for a loved one seeks advice to check they are getting all the financial help and practical support they are entitled to.”
New pharmacy leaflet Carers UK and Lloydspharmacy have produced a leaflet for carers which gives information on getting support as a carer, sources of help and how to manage medicines safely. ‘Caring for carers – looking after you’ is now available in local Lloydspharmacy stores. Lloydspharmacy has over 1,650 pharmacies across the UK, mainly in community and health centre locations including 440 GP-practice-based pharmacies.
Chair’s welcome David Grayson is the new Chair of Carers UK. David has been on the Board of Trustees since 2012 and was elected to the chair in December last year. He is a former chairman of the National Disability Council and cares for his mother in Sheffield. “Hello and welcome to the first Caring magazine of 2014 and my first issue as the newly elected chair of Carers UK. We have an exceptionally challenging year ahead of us. The Government is pressing ahead with some of the biggest benefit changes in recent history and we are already seeing how this impacts financially on families who are caring. On page 9 you can read about Zara and Chris who have lost hundreds of pounds in recent benefit cuts. They were just two of the thousands of carers who gave evidence to our Caring and Family Finances Inquiry about how the cuts and reforms are affecting them. You can read an update on pages 8 and 9. It was clear from our research for Carers Rights Day that many people are missing out on help they are entitled to (see page 3) and still too few people know where to turn to for help. That’s why Carers UK has expanded our Adviceline, which is now open 5 days a week. We’re growing the organisation in other ways too. Our membership has been growing steadily over recent years but we want more carers to join us, so we can make our voice louder. One way we hope to improve our reach is through refreshing the look and feel of Carers UK’s publications and websites. Later on in 2014 we’ll be giving a fresh coat of paint to our logo and we hope this will improve our appeal and help us reach more carers. This will also be the theme of this year’s Carers Week when we will be taking part in a Quest to find more ‘hidden’ carers (see page 2). We hope you and your local carers’ organisations will join us and take part. As someone who didn’t think of myself as a carer until I came into contact with Carers UK, I am very keen that we connect with many more of the 6.5m carers across the UK. There’s no doubt that 2014 will be an important year, but as we look ahead then it’s 2015 which will be a real milestone. Carers UK will celebrate our fiftieth year and already our staff are planning how best to celebrate and commemorate this important anniversary. It’s important that we remember our history and the many thousands of carers whose dedication and drive have created this movement and sustained it over fifty years. 2015 will also be a UK General election year which will present opportunities for us to campaign and improve public recognition of the critical role carers play in society. At the last UK election, for the first time in history, we heard our then Prime Minister Gordon Brown, and opposition leaders David Cameron and Nick Clegg all talking about carers. That was a sign of how important carers had become on the political agenda. We’ll make sure we make the most of the next election and together with your help we will stand up for carers.” www.carersuk.org CARING 5
Raising funds…
Put a spring in your step and get fundraising
r e s i a r d n u F r a St
Spring is just around the corner. Here’s some “eggciting” ideas for you to think about!
Bobby Park organised a charity cycle ride in support of Carers UK competitive : Get into the ff o ke ca er East bake a cake mmunity and co ur yo in t spiri tion off the rry proud. Auc Be y ar M e ak to m and donate ghest bidder hi e th to s cake ! to Carers UK the proceeds
Two years ago at the age of 51, Sean O’Neill was diagnosed with early onset Alzheimer’s. It came as a huge shock to him and his wife, Carers UK member and campaigner, Rosemary. Sean had to give up work on North sea oil rigs straight away, and their lives changed overnight. Bobby Park, one of Sean’s former workmates, decided that he had to do something to help. Describing Sean’s diagnosis as “an absolute bolt from the blue”, Bobby, who is a seasoned fundraiser, rallied the troops and organised a charity cycle from Aberdeen to Cape Wrath. “The cycle for Sean was a no brainer for me. I felt the pain Rosemary was going through and wanted to help those groups that had helped them. Rosemary has told me of the great support she gets from Carers UK.” The 7 day cycle saw them cover not only rough terrain, but also braving a mixture of the elements: “It was the most beautiful cycle I have done although we had all seasons in that week”. As well as the cycle ride, Bobby and his offshore colleagues organised a quiz night and between them have raised an amazing £1,450. This has been split between Carers UK and their local branch of the Alzheimer’s Society. A huge thank you to Bobby and his colleagues for all their hard work and fantastic fundraising achievements.
er egg hunt Get hunting: Arrange an East perhaps – charge a small entry fee, and ses to ines bus l loca Ask . have a raffle too donate prizes.
h is Spring clean: One person’s tras ng is the another person’s treasure. Spri anted ideal time to get rid of any unw house. Hold clothes and clutter around the on eBay and a jumble sale or sell the items UK. donate the proceeds to Carers
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“I felt the pain Rosemary was going through and wanted to help those groups that had helped them.”
…and changing lives
Coming up…
It’s marathon time!
London In April it’s the big ones: the Brighton and ric elect the e rienc expe to want Marathons! If you ing 26.2 runn fancy t don’ but ts, even atmosphere of these spur on our miles, then we’re looking for cheerers to with touch in get est inter your ter runners! To regis on eye an keep or k.org beth.ellard@carersu mation. www.facebook.com/carersuk for more infor
Changing lives It’s thanks to the wonderful fundraising efforts of our supporters that more people are able to receive help. Norman cares for his wife Rosamund who has MS. For the first 10 years Rosamund’s illness progressed slowly. Then, quite suddenly, her physical health and ability deteriorated. Norman found himself trying to juggle work and increasing amounts of care. Life became a constant struggle. At 56 Norman reached crisis point. He was on his way to work when he collapsed. The serious impact on his physical and mental health meant Norman had to give up work to care. This also meant the couple’s income plummeted and they fell into serious financial difficulty. Norman’s experiences led him to become a passionate campaigner for carers and a committed supporter of Carers UK: “Carers UK give me options. For anyone who thinks they are going to be in the role of carer, I would say get advice early on as to what’s available and it will save an awful lot of stress, heartache, pain, financial damage. I wish I had found Carers UK earlier.” PS – You can read more about Norman in our article on page 14.
If you’d like to celebrate Carers Week 2014 by getting involved in some fundraising, keep an eye on our website for ideas and more information.
Who do you know? We’re on the search for future fundraising stars… can you help? Do you or a friend or family member work at a national or international company? Could you encourage them to consider Carers UK as a cause to support? We can help you promote Carers UK to your HR or Corporate Social Responsibility team and provide a bundle of great fundraising ideas which companies love. Get in touch, we’d love to know who you know. Email fundraising@carersuk.org
If you want to support Carers UK or have your own fab fundraising tale to tell, get in touch! Call 020 7378 4952 or email fundraising@carersuk.org
“Carers UK give me options... I wish I had found Carers UK earlier.” www.carersuk.org CARING 7
Campaigns
Fighting your
corner A year ago, Carers UK launched the Caring & Family Finances Inquiry to provide definitive evidence of the financial impact of caring, and to assess the impact of Government changes to the benefits system.
“We need to change attitudes and that means raising awareness in the corridors of power.” Coping with the physical and emotional realities of caring is tough enough, but as the cost of living continues to rise, life for families caring for loved ones is harder than ever. Over the past year Carers UK has conducted extensive research to investigate how caring affects savings and debt; the hidden costs of caring; the financial impact of giving up work or reducing hours to care and the costs of paying for care. We held inquiry sessions in every English region and across the nations and collected evidence through surveys and public polls. We listened carefully to the concerns of carers – your concerns – and have taken them to MPs and Peers, business and to the public. We have joined
Glasgow
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forces with others who are campaigning to challenge the devastating housing benefit reforms – and are still calling for an exemption for disabled people and their families being hit by the ‘bedroom tax’. We need to change attitudes and that means raising awareness in the corridors of power and raising the public profile and understanding of the reality of caring. Such truths are always most powerfully told through the real life stories of those affected and we are indebted to all those who have given time to share their experiences through the Carers UK Caring & Family Finances Inquiry. We will be using the results of the Inquiry to campaign throughout 2014.
Hertford
The Inquiry recommendations include: • an urgent review of carers’ benefits, • action to reduce carers’ living costs, • exemptions for carers from benefits changes including cuts to Housing Benefit and support with Council Tax • additional workplace support for carers combining work and caring.
Manchester
Campaigns What was the purpose of the Inquiry? There were three main objectives : • To provide a definitive study into the financial impact of caring – with carers’ voices at its heart. • To assess the impact of the Government’s welfare changes on carers and their families. • To develop future policy on reforming the financial support available to families caring.
How did we get carers’ opinions? We received evidence submissions from over 3000 individual carers from across the UK. We held ‘evidence sessions’ at locations including Edinburgh, Cardiff, Glasgow, Jarrow, Leeds, Manchester, Slough, Sutton Coldfield, and Taunton. We also carried out some polling of the general public.
What did we find? The Inquiry found clear financial issues for those caring for loved ones. The six key areas were : 1.The rising cost of living: Carers are clearly feeling the rise in living costs more acutely because of extra spending on ‘the costs of caring’, particularly utility and food bills and travel costs. 2. The costs of care services: There is growing financial pressure as a result of changes to social care services – rising charges or reductions in care packages or direct payments with families forced to make up the shortfall. 3. The impact of the Welfare Reform Act: Changes implemented last April, including replacement of Council Tax Benefit and changes to Housing Benefit, are having a significant impact on carers and their families. 4. Anxiety about the future: Many carers feel their long-term financial situation is already precarious or unsustainable, leaving them worried about future changes. A repeated message was, ‘it is hard already, I do not know how I will cope with less support.’ 5. The public view on benefits: Carers expressed anger and frustration that the public portrayal of work and benefits fails to positively recognise their situation and contribution, and labels them as undeserving. 6. Carer’s Allowance: Carers feel this is not fit for purpose. New concerns from the Welfare Reform Act add to historic problems around the level and restrictions of Carer’s Allowance – particularly around the earnings limit and the State Pension.
Slough
Taunton
Zara and Chris Zara, 58, cares full time for her husband, Chris, who has Huntington’s Disease. The symptoms of Huntington’s meant Chris had to give up his work as a mechanic. Zara and Chris had only recently married and had just bought their “dream cottage” together. At first Zara was able to continue work and care for Chris but as his health deteriorated he needed more support and Zara struggled to maintain their income alongside caring. Zara’s own health has also suffered and she has had two strokes in the past 10 years. Six years ago she gave up her job at a teacher training college to care fulltime for her husband. The drop in income meant they simply couldn’t afford their mortgage and they sold up and moved to Local Authority accommodation. Like many other families we spoke to, Zara and Chris are struggling with rising costs of living – especially energy and food prices. For health reasons their home needs to be kept warm day and night. Zara cannot reduce the bills by cutting down on food for her ill husband – his condition means he loses weight rapidly and to maintain his health he must have a high calorie diet. So Zara is trying to get by through saving money on her own food bills, restricting herself to one small meal a day. Zara and Chris live in a two bedroom home and have been hit by the ‘bedroom tax’. Chris’s illness means his sleep is constantly disturbed so Zara sleeps in the second bedroom. It is now considered to be ‘spare’ so they face a £15 a week shortfall in their rent . They also pay more following cuts to Council Tax benefit – together this means finding £884 more a year. After a battle, Zara and Chris have received a temporary 'Discretionary Housing Payment' to cover the ‘bedroom tax’ but there is no guarantee this will be re-awarded when they reapply in two months time. “I have been my husband’s full time carer for 12 years now, without a break”, Zara says. “When I see my husband deteriorate day by day it makes me angry. We just want to enjoy what time we have left together and not have to fight for every little crumb the Government or local authority throws our way.” www.carersuk.org CARING 9
Your organisation
National Carers Summit 2013 Every November, around 200 of our members gather to share their views, have a conversation with Government and help us shape our priorities for the next year.
The Summit started with Heléna Herklots, Chief Executive of Carers UK, outlining the key priorities for the next year, stating that fighting for greater financial support for carers continues to be at the heart of Carers UK’s work. Heléna read from one of the hundred letters which carers affected by the bedroom tax wrote to the Prime Minister – delivered by carers to Downing Street in July. She also highlighted the wider work of our Caring & Family Finances Inquiry into the costs of caring and carers’ experiences of the benefits system, commenting on the terminology used to describe society’s safety net : “When did it become welfare benefits? When did it become a ‘benefit’? I think it’s about time we reclaimed that notion of shared social security.” Next was a Q&A session with a panel of four Carers UK volunteers. Each volunteer spoke about their own personal caring experiences, before answering questions put to them by the audience and listeners joining online. Whether working with GPs, out in
their local community or providing listening support on the Carers UK Adviceline, each volunteer spoke of a desire to make life better for other carers who are experiencing the challenges that they once went through. Richard Cross spoke about the difficulties he faced when he started caring for his wife,
Priorities for Carers UK More advice and support for carers One of the most important things to have when you are caring is the right information. This year Carers UK has used money from Text Santa fundraising to expand the Adviceline to five days a week.. Local ways for carers to support one another Carers UK wants to be more effective at supporting local carer groups. We’re also using local Ambassadors to reach more carers Campaigning on the financial costs of caring. As we continue to campaign against cuts to social security, our Caring and Family Finances Inquiry has been gathering evidence and making the case for better financial support for carers Ensure carers’ rights are protected and improved Through our work on social care policy and legislation, we will fight to ensure that carers’ rights are protected and where possible made better.
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saying: “As a carer, I know that a caring role is a desert of confusion, and I see Carers UK as an oasis of support.” The afternoon kicked off with journalist John Stapleton chairing two hard-hitting Q&A sessions. First up was Steve Webb MP, Department for Work and Pensions Minister, who was
Your organisation questioned by the audience on recent welfare reform, the Government’s financial support for carers and the low level of Carer’s Allowance. Next former Care Minister Paul Burstow MP set out his vision for a health and care system which recognises the needs of carers and is flexible enough to support the changing shape of families. He also highlighted the far greater contribution needed from the NHS to support and work with carers. The day closed with a look forward to the general election in 2015. The audience was asked to hold up a green card if they had ever taken action by writing to their MP about an issue that affects them. A sea of green confirmed that the audience would be fighting as hard as ever, speaking out about carers’ rights and challenging Government on the issues that affect carers.
My day at the Summit Joanie Speers, London This year was Joanie’s first time at the National Carers Summit. She is a Carers UK Adviceline volunteer and provides listening support to carers, taking between five and 15 calls in her weekly two and a half hour shift. “I cared for my mother for over three years, with each year growing in involvement and intensity. I gave up my job to care and ended up managing all of her day-to-day and medical care. She died last December, aged 94. Being a Carers UK Adviceline volunteer means I can use some of the experience and knowledge I have acquired to help other carers. Being on the Q&A panel was great fun – I find talking about a subject I feel strongly about is quite exciting. The other panel members were wonderful. It was amazing to be able to meet all the people from Carers UK that I know by telephone only. It was a lively event, and I’m pleased to say that my sister who travelled over from the US for a visit also came and was impressed by the whole day!” Rosemary O’Neill, Newcastle Rosemary has been a member of Carers UK since 2006 and is a volunteer on our online forum. She has cared for her parents, her husband and her brother. This was her fifth time at the National Carers Summit. “The Summit is always a great opportunity to meet Carers UK members and find out what is going on within the organisation. Finding news out at the Summit feels a lot more real than receiving a newsletter or email. I knew a bit about the Carers UK Ambassador scheme already, but actually hearing the volunteers talk about how they were using their personal caring experiences to help others was really powerful. “For me, the most powerful bit was when Heléna asked for a show of hands of who was at the Summit for the first time. First-timers were definitely in the majority, which is fantastic to see. It’s nice to know that you are a member of an organisation that isn’t standing still – it’s moving and expanding, but with a commitment to reach more carers in their local communities and involve local carers’ groups.” Rob Kay, Glasgow Rob cares for his 19-year-old son and has been a Carers UK member for 22 years. Rob has attended the National Carers Summit before, but this year tuned into Carers World Radio for the live stream. “I used to attend the National Carers Summit fairly regularly, but it is increasingly difficult to find the time now. It was definitely valuable having the option to tune in to the Summit online through Carers World Radio. The best bit for me was the ‘exclusive’ interviews with some of the key players behind the scenes – I saw interviews with Heléna, Don Brereton (the outgoing Carers UK Chair), John Stapleton and Paul Burstow MP.”
e summitor?ld Radio broadcast of the Missed tathch m the Carers W orldradio.co w arersw You can still visit www.c ers Summit – ar C l na io at N
www.carersuk.org CARING 11
Technology
Circles of care We meet one family who are facing up to the challenges of modern family life and finding technology has a part to play. property suitable for their mum to move into. So, between them, they decided that while Joyce’s health allowed they would work out a plan of shared care.
Rota
Society has changed a lot since the days when multiple generations of the same family lived on the same street or even in the same house. Nowadays the different generations and different siblings might live apart, in different cities, regions or even countries. For some families care responsibilities will be shared between different family members and even friends and neighbours. Co-ordinating care amongst different people from opposite ends of a motorway, often alongside additional responsibilities such as paid work and children, can quickly become stressful and challenging. But there is increasing evidence that this pattern of ‘distance caring’ can be made a little easier with technology. Carers UK has been researching caring technologies for many years, and found much to support the benefits of telecare alarms and remote monitoring devices. Research on the problems of ‘distance caring’ and also ‘sandwich caring’ – where people are caring for older relatives as well as children and grandchildren – has added to the knowledge. In response to this Carers UK has launched our own product called Jointly – a tool for mobile phones, tablets and computers that offers simple and practical ways to share information and co-ordinate tasks amongst a circle of people all giving care for a loved one.
Shared care One family who share care are the Brosnans. Ann Brosnan, 52, and her two older brothers have shared the care for their 92year-old mum Joyce for the past four years. After Joyce’s husband died 20 years ago she continued to live independently. Ann lived 20 miles away, her two brothers and their wives further afield – Stephen, 60 miles away in Oxford and, Peter, over 200 miles away in the Yorkshire Dales. Four years ago, when Joyce began to show clear signs of dementia, the three siblings decided they wanted to work together to provide the help she needed. Joyce wanted to stay in her own home and no one in the family was living in a
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They worked out a care rota which also drew on the support of Joyce’s neighbours for the times when the family could not physically be there. The family relied on shared online calendars and care plans, along with essential information on medication and used emails and Skype calls to keep each other in the loop of their mum’s health and needs and to confer with each other when decisions needed to be shared. “We needed to share regular updates and feedback with each other, but we could also share input from Mum’s neighbour who would let us know if a care worker had arrived, or if mum had eaten properly when we couldn’t be there,“ Ann said.
Co-ordinating While the Brosnan family had the technical know-how to get a variety of online communication tools working smoothly together, many people find co-ordinating care much more difficult. That’s the problem that Carers UK has set out to solve with Jointly, by bringing together all the tools required so everyone in a circle of care can use them with ease.
Jointly is available to download from Apple and Google Play stores. • One off payment of £2.99 • Invite as many people as you want to share the care with you • No additional cost for people you invite to join. • PC/Laptop version also available from jointlyapp.com Find out more at carersuk.org/jointly
Trustees
A chat with the chair David Grayson is the new Chair of Carers UK. David started his working life in
NEW TRUSTEES At the AGM in November 2013 our members elected three new Trustees to the Board. We meet them.
marketing management but for most of his career has been a social entrepreneur – starting or running a number of public-privatecommunity partnerships. He is currently Professor of Corporate Responsibility at the Cranfield School of Management. Congratulations on being elected chair. Tell us about your involvement in caring. My passion for caring and the role of carers comes from personal experience. At the age of eleven I contracted a lifethreatening bone disease and for a year I was cared for by my parents. I was utterly dependent on them to do everything for me. Now the tables have turned and I am helping my 91 year old mum maintain her independence, in her own home in the North of England. How did you get involved with Carers UK? I became a member in summer 2012 and joined the board at the end of 2012. Apart from being a carer myself, it feels a logical step from my previous experiences as a disability rights campaigner. I used to chair the National Disability Council, which was the forerunner of the Disability Rights Commission. What do you think are the big challenges facing carers? There are three main ones that come to mind. The first is the physical and emotional resilience that is required to balance caring, working and living. That’s why our Adviceline and the opportunities we provide to connect with fellow carers, are so important. Secondly there is the challenge of knowing what help is available and how to access it at various stages on the caring journey. This is why the expansion of our advice services is so important. Finally there is the cost of living and finances, especially if you have to give up paid work in order to be a carer. That’s why our campaigning and the current Caring & Family Finances Inquiry are so crucial. Do you have a message to the members of Carers UK? Caring is a fundamental part of being human. Carers UK is working to support carers and fighting to get a fair deal for carers. If you are able and willing to help us in our work, we are enthusiastic to use your support!
Name: Terry Purnell Location: Bournemouth I’m caring for my 98 year old mother-inlaw. In addition we care for our youngest daughter who suffers from anxiety attacks and anorexia. Carers face so many problems. New carers face an uphill struggle finding how to get help and support. Another problem is older carers who are not familiar with computers and can’t get information when a website address is the only reference point. Employers aren’t always aware of the carers in their companies and there is a lack of understanding of carers’ problems from professionals, especially now that budgets are reduced and not ring fenced. Name: Annie Dransfield Location: Leeds I care for my son aged 34. I also care for my mother who had a stroke and my father who has Alzheimer's. Although they’re both in care homes I still have a caring role as I deal with their paperwork and finances. For me, caring is hard work yet rewarding. I enjoy the time I spend with my son. We laugh together and cry together – he has a wonderful sense of humour. It’s all the practical chores that make caring hard work and long hours. There are so many injustices that carers have to deal with. Dealing with just one problem generates phone calls, letters, time and effort, when this is the last thing carers need in their life. Name: Martha Wiseman Location: London I became a carer for my mother at the age of fourteen when she had a serious nervous breakdown. As time passed, the severity of mental health problems partly gave way to vascular dementia, and caring for my mum was then much more practical and protective as she became frail and much more vulnerable. At times I also supported my grandfather and father as their health deteriorated in older age. The hard emotional and physical graft of caring is often unacknowledged, especially if you’re caring without support from friends, family and agencies. A big challenge is also the complexity and political stinginess of the UK benefit system.
www.carersuk.org CARING 13
Support
You’re not alone Caring can leave you isolated but help is at hand.
One of the problems that can come with caring is isolation. For some people caring can mean you’re stuck in one place and unable to get out to social events. Carers tell us if they do get a bit of spare time they can be too exhausted to do anything with it. They can end up cut off from their usual networks of friends and family. Back in 1963 our founder Mary Webster described this feeling as like being “under house arrest.” Sadly it’s still a common feeling for some carers, fifty years later. That’s why Carers UK is working alongside our members to find new ways to help end that isolation. Caring for someone else can be a tough and difficult experience. All carers need some support and back-up. Those who don’t get it will unfortunately run the risk of poor health. There is plenty of research evidence that shows how being a sole carer, especially if caring round the clock, brings serious risks to your health and well-being.
"I felt totally isolated because your whole network’s gone." Isolation Even with the occasional support of friends and family, some carers will still find themselves becoming isolated. Recent market research, commissioned by Carers UK, shows that over a third of carers feel isolated in their caring role. Over half said that although friends and family are around they don’t really understand the caring situation. Just under half also said that whilst they had contact with professionals, they weren't asked about their caring role or their needs. Sometimes the only people who can truly understand how that feels are other carers. That’s where Carers UK comes in.
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Much of our work is about connecting carers with each other, to offer that important emotional support that only carers can give each other. For example our online support forum is one way members can connect with each other through the website. But it was a voice on the end of a telephone that made a difference to Norman, one of our members who was looking after his wife with MS.
Support As things got tougher he had to give up his paid job to care full time. “I didn’t feel isolated while I was able to go out to work and do caring” says Norman, “but once I tried to be a carer full-time, I felt totally isolated because your whole network’s gone.” Like many carers, Norman soon found his existing support network dwindled. “People come round for a while but not for long. So you really need to rebuild that network, but you don’t know where to look, because you think everyone else is coping and you think it can only be me that isn’t coping.” For Norman calling Carers UK and speaking to one of our volunteer carers was the connection that made a difference. “It wasn’t until I came across Carers UK and I spoke to the Adviceline and they started talking about a life of your own. You start to talk to people who are in a similar position to you, and you realise there’s lots of you in that position.”
• Carers UK’s telephone Adviceline service can offer advice and a listening ear. It’s open Monday to Friday on 0808 808 7777 • Our online members support forum is open 24/7 at www.carersuk.org/forum
Support
Online support Marie & Mike Carers UK has teamed up with the volunteering charity Timebank on a new project called Carers Together. We match carers who need support with volunteer mentors who understand first hand what caring is like because they have cared themselves. They connect online via email and websites.
Marie cares 24/7 for her daughter and explains how regular online contact with a mentor is helping her in her caring role. “I don't have anyone to talk to about caring. I find it very difficult to confide in family and friends as I feel as if I'm failing in my role or I'm making a fuss. Having someone to talk to has really helped me have an outlet for my thoughts and feelings. Caring does make me feel lonely and isolated. My daughter and I are together 24/7, she is even taught at home by the local authority so there is no respite. We tend to stay at home as she finds going out difficult and it's just easier to stay in. My mentor suggested I make a note each day when I accomplish an important action such as a phone call or sending an email. This has been very useful to me in seeing the positives that I achieve each day. They have been able to signpost me to other organisations and I feel more confident about doing so. As a result of 'talking' to my mentor I have requested a carer's assessment which I think will really help me. I definitely feel less alone as there is someone who will listen to me and I won't be judged.”
Mike is a former carer who volunteers his time to work as an online mentor with Carers Together. “For the last ten years I worked in a hospice where I organised carer support groups so I got to know a lot about the problems faced by carers. I also cared for my wife for some years when she had cancer. I felt that I understood, from these experiences, quite a lot about caring so when I retired I decided to continue to do something in the field. Caring can be very isolating emotionally because it can be difficult to talk about what is happening. Someone at the end of an e-mail can be very useful. I’m surprised how people are able to say very personal and intimate things in an e-mail that they might find difficult to say ‘face to face’. I get a sense that for some of them it’s a huge relief to be able to say things that are a real burden. I find it very rewarding that carers are able to trust me with difficult and personal details about the stresses they are facing. There are thousands of carers out there, many of whom feel lonely and uncertain about where to go for help. Often they think that they’re the only one with the problem but if you have been a carer you will know this isn’t true. You don’t need to be an expert, just willing to try to see things from their point of view and to share some of your experience.”
If you live in England and would like to be put in touch with an online mentor or volunteer your time to help other carers, contact Timebank on 0121 236 2531 Email: carers@timebank.org.uk or see timebank.org.uk/carers-together for more information. The scheme also offers face to face mentoring if you live in Birmingham. www.carersuk.org CARING 15