Caring Magazine, spring 2014

CaringMarch 2014

CARERSUKthe voice of carers

Fighting your corner

The magazine for members of Carers UK

www.carersuk.org CARING 3

CaringCarers 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: [email protected]

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: [email protected]

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).

Produced by Temple Design for Carers UK

© 2014 Carers UK

News

Carers UK, backed by journalist JackieAshley, has launched a campaign forstatutory paid leave for carers. We arecalling for a legal right to a minimum offive days paid ‘care leave’ and for adebate on rights to longer periods ofleave to care for loved ones. Jackie Ashley is leading calls for new

rights after her own experiences takingtime off work to care for her husband,journalist and political commentatorAndrew Marr, who suffered a stroke.Jackie Ashley said, “Just as maternityleave once seemed unthinkable but isnow widely accepted, so the right to careleave needs to become part of thepattern of employment. It is madness thatso many carers lose their jobs for ever.”A YouGov opinion poll, commissioned

by Carers UK, showed overwhelmingpublic backing for the change – with 9 in10 supporting the call for a new right toshort periods of time off work to care.The UK is falling behind globally, with‘care leave’ policies already introduced incountries across the world includingGermany, Canada, Japan, Australia,France, Italy, USA ,Belgium, Poland,Ireland, Taiwan and the Netherlands.Currently workers with caringresponsibilities only have rights to unpaid‘emergency leave’, usually limited to aday or two if a loved one has a crisis.Carers UK says this is failing families andbusinesses.Our evidence is published in a report,

'The Case for Care Leave' as part ofCarers UK’s Future Care series.

Call for paid ‘care leave’

New Vice-President Carers UK is delighted to welcome Caroline Waters OBE as anew Vice President. Caroline was founding Chair of Carers UK’sbusiness forum, Employers for Carers. Formerly Director ofPeople and Policy at BT, she is now Deputy Chair of the Equalityand Human Rights Commission. We're also pleased toannounce that our retiring Chair Don Brereton, CB has agreedto become a Vice-President.

Vice-President is an honorary position which is offered to individuals who havesignificantly contributed to furthering the carers’ cause through their work, whohave achieved distinction in public life, and who wish to assist Carers UK inachieving our goals. Our other Vice-Presidents are Rt Hon the Baroness Bottomleyof Nettlestone, DL, The Baroness Flather, DL, Dr Hywel Francis MP and our formerChief Executive The Baroness Pitkeathley, OBE.

4 CARING www.carersuk.org

News

Northern Ireland: Walk in my shoesCarers Northern Ireland held their annual summit and conference in Ballymena inOctober 2013. Carers UK Chair Don Brereton set the scene by highlighting some ofthe 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 mostimportant aspect of dementia care. Quoting Maya Angelou he said: “People willforget what you said. People will forget what you did. But people will never forgethow 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. Formany years they were in denial about his condition – Esme spoke of how 'no onehad invited this intruder into their lives' and how as a carer she had becomeisolated 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, tosee what I do. I can’t believe it and neither would you.”

Carers UK has come together with 18charities to write to the Prime Ministerafter he once again claimed, incorrectly,that disabled people were exempt fromHousing Benefit ‘bedroom tax’ changes.In a Parliamentary debate in late

November the Prime Minister said theGovernment had exempt disabled peoplewho needed an extra room, echoingcomments he made earlier in the yearthat disabled children and peopleneeding round the clock care were notaffected.

Our letter tells the Prime Minister “wewere deeply disappointed by your remarksin the House of Commons.” It goes on tosay “We are now even more concernedthat the effects the policy is having ondisabled people and their families are notunderstood in Government.”The letter highlights to the Prime

Minister the confusion caused “whensenior Government figures state thatthese families are exempt when they arenot, our organisations have to respond tothe false hope this generates. We receive

the relieved calls and messages fromfamilies who are struggling to pay theirrent shortfall, and it falls to us to tell thosefamilies that they are, in fact, subject tothese cuts and are not exempt.”The letter, also signed by charities

including Disability Rights UK, RethinkMental Illness and RNIB, repeats calls forurgent action to deliver exemptions forcarers and disabled people, arguing thatthe Government’s discretionary fund fordisabled people affected is inappropriateand inadequate.

Scotland: Carers’ parliament

PM wrong again on ‘bedroom tax’ exemption

Quality of life?New figures on quality of life show carersfeel they don’t have control over their lives,don’t have time to do things they value andneglect their own health and wellbeing as aresult of the care they provide.The new NHS statistics come from a

survey of people providing unpaid care toadults in receipt of Social Services during2012-13. A massive 78% of carers saidthey don’t have enough or any time to dothings that they value and enjoy. Less thana third said that they had the control theywanted over their everyday life. Nearly aquarter reported suffering from a long-standing illness and a fifth stated theyhave a physical impairment or disability.

Carers from across Scotland travelled toEdinburgh for the second CarersParliament for a day of debates aroundthe theme “Your Rights”. Almost 200delegates attended, including CarersScotland members, who heard fromspeakers including the Minister for PublicHealth, Michael Matheson MSP . A popular speaker was carer Sharon

Coleman, who shared her story of howshe fought for and won landmark rightsfor carers in the workplace. One carer saidthey had, “enjoyed hearing Sharon'sstory. Very inspirational.”The delegates also had a lively debate

on the topic “Should the priority be topublicise and enforce existing carer rightsrather than create new rights?”. Manytalked about their experiences of findingout about their rights and of actuallyaccessing them.

First Minister Alex Salmond also attendedthe event to announce plans for specificlegislation that will promote, defend andextend the rights of carers and young carersacross Scotland. Simon Hodgson, Director ofCarers Scotland, said the announcementmarked “another important milestone inrecognising the crucial role carers play inhomes across the country. It was good of theFirst Minister to take time out and to bringalong a new statement of intent, which Ihope he will uphold. I am pleased that one ofthe manifesto commitments is the reshapingof care for older people who are in a caringrole.” Carers Scotland will be working withthe Government as its consultation beginsand will be providing briefings andopportunities for carers to get involved. Areport from the Carers Parliament and afilm of the day will be available on theCarers Scotland website in early 2014.

News

Chair’s welcome


David Grayson is the newChair of Carers UK. David hasbeen on the Board ofTrustees since 2012 and waselected to the chair inDecember last year. He is aformer chairman of theNational Disability Counciland cares for his mother inSheffield.

“Hello and welcome to the first Caring magazine of 2014 andmy first issue as the newly elected chair of Carers UK. We havean exceptionally challenging year ahead of us. The Governmentis pressing ahead with some of the biggest benefit changes inrecent history and we are already seeing how this impactsfinancially on families who are caring. On page 9 you can readabout Zara and Chris who have lost hundreds of pounds inrecent benefit cuts. They were just two of the thousands ofcarers who gave evidence to our Caring and Family FinancesInquiry about how the cuts and reforms are affecting them. Youcan 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 (seepage 3) and still too few people know where to turn to for help.That’s why Carers UK has expanded our Adviceline, which isnow open 5 days a week. We’re growing the organisation inother ways too. Our membership has been growing steadily overrecent years but we want more carers to join us, so we can makeour voice louder. One way we hope to improve our reach is through refreshing

the look and feel of Carers UK’s publications and websites. Lateron in 2014 we’ll be giving a fresh coat of paint to our logo andwe hope this will improve our appeal and help us reach morecarers. This will also be the theme of this year’s Carers Weekwhen 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’tthink 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 6.5mcarers 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 areplanning how best to celebrate and commemorate thisimportant anniversary. It’s important that we remember ourhistory and the many thousands of carers whose dedication anddrive have created this movement and sustained it over fiftyyears. 2015 will also be a UK General election year which will

present opportunities for us to campaign and improve publicrecognition of the critical role carers play in society. At the lastUK election, for the first time in history, we heard our then PrimeMinister Gordon Brown, and opposition leaders David Cameronand Nick Clegg all talking about carers. That was a sign of howimportant carers had become on the political agenda. We’llmake sure we make the most of the next election and togetherwith your help we will stand up for carers.”

Record 360,000 carers missout on £1bn allowancesRecord numbers of carers are missing out on vital financialsupport due to a lack of advice. Research published by Carers UKto coincide with Carers Rights Day in November, shows the totalof value of unclaimed Carer’s Allowance has risen to over £1.1billion 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 andinformation. Almost 6 in 10 of those missed out for more thantwo years – resulting in the loss of thousands of pounds inincome.With rapidly rising costs of living hitting caring families hard,

Carers UK says a lack of financial support is putting carers atrisk 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 ofadvice for carers leading to long delays in them accessingessential support like Carer’s Allowance. It is vital that anyonecaring for a loved one seeks advice to check they are getting allthe financial help and practical support they are entitled to.”

New pharmacy leafletCarers UK and Lloydspharmacy have produced a leaflet forcarers 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 localLloydspharmacy stores. Lloydspharmacy has over 1,650pharmacies across the UK, mainly in community and healthcentre locations including 440 GP-practice-based pharmacies.


Raising funds…

Put a spring in yourstep and getfundraising Spring is just around the corner. Here’s some“eggciting” ideas for you to think about!

Two years ago at the age of 51, Sean O’Neill was diagnosed with earlyonset Alzheimer’s. It came as a huge shock to him and his wife, CarersUK member and campaigner, Rosemary. Sean had to give up work onNorth sea oil rigs straight away, and their lives changed overnight.

Bobby Park, one of Sean’s former workmates, decided that he had to dosomething to help. Describing Sean’s diagnosis as “an absolute bolt from theblue”, Bobby, who is a seasoned fundraiser, rallied the troops and organiseda charity cycle from Aberdeen to Cape Wrath.

“The cycle for Sean was a no brainer for me. I felt the pain Rosemary wasgoing 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 donealthough 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 beensplit 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.

“I felt the pain Rosemary was goingthrough and wanted to help thosegroups that had helped them.”

Bobby Parkorganised acharity cycle ridein support ofCarers UK

Easter cake off: Get into the

competitive

spirit in your community and

bake a cake

to make Mary Berry proud. A

uction off the

cakes to the highest bidder a

nd donate

the proceeds to Carers UK!

Get hunting: Arrange an Easter egg hunt

– charge a small entry fee, and perhaps

have a raffle too. Ask local businesses to

donate prizes.

Spring clean: One person’s trash is

another person’s treasure. Spring is the

ideal time to get rid of any unwanted

clothes and clutter around the house. Hold

a jumble sale or sell the items on eBay and

donate the proceeds to Carers UK.

Star Fundraiser

…and changing lives

Who do youknow?We’re on the search for futurefundraising stars… can you help? Doyou or a friend or family memberwork at a national or internationalcompany? Could you encouragethem to consider Carers UK as acause to support? We can help youpromote Carers UK to your HR orCorporate Social Responsibilityteam and provide a bundle ofgreat fundraising ideas whichcompanies love. Get in touch,we’d love to know who youknow. [email protected]

If you’d like tocelebrate CarersWeek 2014 bygetting involved insome fundraising,keep an eye on ourwebsite for ideas andmore information.

Changing livesIt’s thanks to the wonderful fundraising efforts ofour supporters that more people are able toreceive help.Norman cares for his wife Rosamund who has

MS. For the first 10 years Rosamund’s illnessprogressed slowly. Then, quite suddenly, herphysical health and ability deteriorated. Normanfound himself trying to juggle work and increasingamounts of care. Life became a constant struggle. At 56 Norman reached crisis point. He was on

his way to work when he collapsed. The seriousimpact on his physical and mental health meantNorman had to give up work to care. This alsomeant the couple’s income plummeted and theyfell into serious financial difficulty. Norman’s experiences led him to become a

passionate campaigner for carers and a committedsupporter of Carers UK:

“Carers UK give me options. For anyone whothinks they are going to be in the role of carer, Iwould say get advice early on as to what’savailable and it will save an awful lot of stress,heartache, pain, financial damage. I wish I hadfound Carers UK earlier.”PS – You can read more about Norman in our

article on page 14.

Coming up…

It’s marathon time!In April it’s the big ones: the Brighton and Lon

don

Marathons! If you want to experience the electric

atmosphere of these events, but don’t fancy running 26.2

miles, then we’re looking for cheerers to spur on our

runners! To register your interest get in touch with

[email protected] or keep an eye on

www.facebook.com/carersuk for more information.

“Carers UK give me options... I wish I had found Carers UK earlier.”www.carersuk.org CARING 7

If you want to supportCarers UK or have yourown fab fundraising taleto tell, get in touch! Call020 7378 4952 or [email protected]

“We need to change attitudesand that means raisingawareness in the corridors ofpower.”

Campaigns

Coping with the physical and emotionalrealities of caring is tough enough, but asthe cost of living continues to rise, life forfamilies caring for loved ones is harder thanever. Over the past year Carers UK hasconducted extensive research to investigatehow caring affects savings and debt; thehidden costs of caring; the financial impactof giving up work or reducing hours to careand the costs of paying for care. We held inquiry sessions in every

English region and across the nations andcollected evidence through surveys andpublic polls. We listened carefully to theconcerns of carers – your concerns – andhave taken them to MPs and Peers,business and to the public. We have joined

forces with others who are campaigningto challenge the devastating housingbenefit reforms – and are still calling for anexemption for disabled people and theirfamilies being hit by the ‘bedroom tax’.We need to change attitudes and that

means raising awareness in the corridorsof power and raising the public profileand understanding of the reality of caring.Such truths are always most powerfullytold through the real life stories of thoseaffected and we are indebted to all thosewho have given time to share theirexperiences through the Carers UK Caring& Family Finances Inquiry. We will beusing the results of the Inquiry tocampaign throughout 2014.


A year ago, Carers UK launched theCaring & Family Finances Inquiry toprovide definitive evidence of thefinancial impact of caring, and to assessthe impact of Government changes tothe benefits system.

Fighting your corner

Glasgow Hertford Manchester

• an urgent review of carers’benefits,

• action to reduce carers’ livingcosts,

• exemptions for carers frombenefits changes including cutsto Housing Benefit and supportwith Council Tax

• additional workplace supportfor carers combining work andcaring.

The Inquiry recommendationsinclude:

Campaigns


Zara and Chris Zara, 58, cares full time for herhusband, Chris, who hasHuntington’s Disease. The symptomsof Huntington’s meant Chris had togive up his work as a mechanic. Zaraand Chris had only recently marriedand had just bought their “dreamcottage” together. At first Zara was able to continue

work and care for Chris but as hishealth deteriorated he needed moresupport and Zara struggled to maintaintheir income alongside caring. Zara’sown health has also suffered and shehas had two strokes in the past 10years. Six years ago she gave up her jobat a teacher training college to care full-time for her husband. The drop inincome meant they simply couldn’tafford their mortgage and they sold upand moved to Local Authorityaccommodation.Like many other families we spoke to,

Zara and Chris are struggling with risingcosts of living – especially energy andfood prices. For health reasons theirhome needs to be kept warm day andnight. Zara cannot reduce the bills bycutting down on food for her ill husband– his condition means he loses weightrapidly and to maintain his health hemust have a high calorie diet. So Zara istrying to get by through saving moneyon her own food bills, restricting herselfto 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 hissleep is constantly disturbed so Zarasleeps in the second bedroom. It is nowconsidered to be ‘spare’ so they face a£15 a week shortfall in their rent . Theyalso pay more following cuts to CouncilTax benefit – together this meansfinding £884 more a year. After a battle, Zara and Chris have

received a temporary 'DiscretionaryHousing Payment' to cover the‘bedroom tax’ but there is no guaranteethis will be re-awarded when they re-apply in two months time.“I have been my husband’s full time

carer for 12 years now, without abreak”, Zara says. “When I see myhusband deteriorate day by day itmakes me angry. We just want to enjoywhat time we have left together andnot have to fight for every little crumbthe Government or local authoritythrows our way.”

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 theirfamilies.

• To develop future policy on reforming the financial support available tofamilies caring.

How did we get carers’ opinions? We received evidence submissions from over 3000 individual carers from acrossthe UK. We held ‘evidence sessions’ at locations including Edinburgh, Cardiff,Glasgow, Jarrow, Leeds, Manchester, Slough, Sutton Coldfield, and Taunton. Wealso 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 sixkey areas were :

1.The rising cost of living: Carers are clearly feeling the rise in living costs moreacutely because of extra spending on ‘the costs of caring’, particularly utility andfood bills and travel costs.

2. The costs of care services: There is growing financial pressure as a result ofchanges to social care services – rising charges or reductions in care packages ordirect 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 financialsituation is already precarious or unsustainable, leaving them worried aboutfuture changes. A repeated message was, ‘it is hard already, I do not know how Iwill cope with less support.’

5. The public view on benefits: Carers expressed anger and frustration thatthe public portrayal of work and benefits fails to positively recognise theirsituation and contribution, and labels them as undeserving.

6. Carer’s Allowance: Carers feel this is not fit for purpose. New concerns fromthe Welfare Reform Act add to historic problems around the level and restrictionsof Carer’s Allowance – particularly around the earnings limit and the State Pension.

Slough Taunton

Priorities for Carers UK

More advice and support for carersOne of the most important things to have when you are caring is the rightinformation. This year Carers UK has used money from Text Santa fundraising toexpand the Adviceline to five days a week..

Local ways for carers to support one anotherCarers UK wants to be more effective at supporting local carer groups. We’re alsousing 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 FamilyFinances Inquiry has been gathering evidence and making the case for better financialsupport for carers

Ensure carers’ rights are protected and improvedThrough our work on social care policy and legislation, we will fight to ensure thatcarers’ rights are protected and where possible made better.

The Summit started with Heléna Herklots,Chief Executive of Carers UK, outliningthe key priorities for the next year, statingthat fighting for greater financial supportfor carers continues to be at the heart ofCarers UK’s work. Heléna read from oneof the hundred letters which carersaffected by the bedroom tax wrote to thePrime Minister – delivered by carers toDowning Street in July. She alsohighlighted the wider work of our Caring& Family Finances Inquiry into the costs ofcaring and carers’ experiences of thebenefits system, commenting on theterminology used to describe society’ssafety net : “When did it become welfarebenefits? When did it become a‘benefit’? I think it’s about time wereclaimed that notion of shared socialsecurity.”Next was a Q&A session with a panel

of four Carers UK volunteers. Eachvolunteer spoke about their own personalcaring experiences, before answeringquestions put to them by the audienceand listeners joining online. Whether working with GPs, out in

their local community or providinglistening support on the Carers UKAdviceline, each volunteer spoke of adesire to make life better for other carerswho are experiencing the challenges thatthey once went through. Richard Crossspoke about the difficulties he facedwhen he started caring for his wife,

saying: “As a carer, I know that a caringrole is a desert of confusion, and I seeCarers UK as an oasis of support.”The afternoon kicked off with

journalist John Stapleton chairing twohard-hitting Q&A sessions. First up wasSteve Webb MP, Department for Workand Pensions Minister, who was


Your organisation

National CarersSummit 2013Every November, around 200 of our members gather to share their views, have aconversation with Government and help us shape our priorities for the next year.

questioned by the audience on recentwelfare reform, the Government’sfinancial support for carers and the lowlevel of Carer’s Allowance.Next former Care Minister Paul

Burstow MP set out his vision for ahealth and care system whichrecognises the needs of carers and isflexible enough to support the changingshape of families. He also highlightedthe far greater contribution neededfrom the NHS to support and work withcarers. The day closed with a look forward

to the general election in 2015. Theaudience was asked to hold up a greencard if they had ever taken action bywriting to their MP about an issue thataffects them. A sea of green confirmedthat the audience would be fighting ashard as ever, speaking out about carers’rights and challenging Government onthe issues that affect carers.

Your organisation


My day at the SummitJoanie Speers, London

This year was Joanie’s first time at the National Carers Summit.She is a Carers UK Adviceline volunteer and provides listeningsupport to carers, taking between five and 15 calls in herweekly two and a half hour shift.

“I cared for my mother for over three years, with each yeargrowing in involvement and intensity. I gave up my job to careand 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 Ican use some of the experience and knowledge I have acquired to help othercarers.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 wasamazing to be able to meet all the people from Carers UK that I know bytelephone only. It was a lively event, and I’m pleased to say that my sister whotravelled over from the US for a visit also came and was impressed by the wholeday!”

Rosemary O’Neill, NewcastleRosemary has been a member of Carers UK since 2006 and is a volunteer on ouronline forum. She has cared for her parents, her husband and her brother. Thiswas 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 theSummit feels a lot more real than receiving a newsletter or email. I knew a bitabout the Carers UK Ambassador scheme already, but actually hearing thevolunteers talk about how they were using their personal caring experiences tohelp 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 themajority, which is fantastic to see. It’s nice to know that you are a member of anorganisation that isn’t standing still – it’s moving and expanding, but with acommitment to reach more carers in their local communities and involve localcarers’ groups.”

Rob Kay, GlasgowRob 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 intoCarers World Radio for the live stream.

“I used to attend the National Carers Summit fairly regularly, but it isincreasingly difficult to find the time now. It was definitely valuable having theoption to tune in to the Summit online through Carers World Radio. The best bitfor me was the ‘exclusive’ interviews with some of the key players behind thescenes – I saw interviews with Heléna, Don Brereton (the outgoing Carers UKChair), John Stapleton and Paul Burstow MP.”

Missed the summit?

You can still watch the Carer

s World Radio broadcast of

the

National Carers Summit – vis

it www.carersworldradio.c

om

Technology


Society has changed a lot since the days when multiplegenerations of the same family lived on the same street or evenin the same house. Nowadays the different generations anddifferent siblings might live apart, in different cities, regions oreven countries. For some families care responsibilities will beshared between different family members and even friends andneighbours. Co-ordinating care amongst different people from opposite

ends of a motorway, often alongside additional responsibilitiessuch as paid work and children, can quickly become stressfuland challenging. But there is increasing evidence that thispattern of ‘distance caring’ can be made a little easier withtechnology. Carers UK has been researching caring technologies for many

years, and found much to support the benefits of telecarealarms and remote monitoring devices. Research on theproblems of ‘distance caring’ and also ‘sandwich caring’ –where people are caring for older relatives as well as childrenand 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 computersthat offers simple and practical ways to share information andco-ordinate tasks amongst a circle of people all giving care for aloved one.

Shared careOne family who share care are the Brosnans. Ann Brosnan, 52,and her two older brothers have shared the care for their 92-year-old mum Joyce for the past four years. After Joyce’shusband died 20 years ago she continued to live independently.Ann lived 20 miles away, her two brothers and their wivesfurther 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 worktogether to provide the help she needed. Joyce wanted to stayin her own home and no one in the family was living in a

property suitable for their mum to move into. So, betweenthem, they decided that while Joyce’s health allowed theywould work out a plan of shared care.

Rota They worked out a care rota which also drew on the support ofJoyce’s neighbours for the times when the family could notphysically be there. The family relied on shared online calendarsand care plans, along with essential information on medicationand used emails and Skype calls to keep each other in the loopof their mum’s health and needs and to confer with each otherwhen 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 whowould let us know if a care worker had arrived, or if mum hadeaten properly when we couldn’t be there,“ Ann said.

Co-ordinatingWhile the Brosnan family had the technical know-how to get avariety of online communication tools working smoothlytogether, many people find co-ordinating care much moredifficult. That’s the problem that Carers UK has set out to solvewith Jointly, by bringing together all the tools required soeveryone in a circle of care can use them with ease.

Circles of careWe meet one family who are facing up to the challenges of modern family life andfinding technology has a part to play.

Find out more at carersuk.org/jointly

Jointly is available todownload fromApple and GooglePlay stores.

• One off paymentof £2.99

• Invite as manypeople as youwant to share thecare with you

• No additional costfor people youinvite to join.

• PC/Laptop versionalso availablefromjointlyapp.com


Trustees

NEW TRUSTEESAt the AGM in November 2013 our members elected threenew Trustees to the Board. We meet them.

Name: Terry Purnell Location: Bournemouth

I’m caring for my 98 year old mother-in-law. In addition we care for our youngestdaughter who suffers from anxiety attacksand anorexia. Carers face so manyproblems. New carers face an uphillstruggle finding how to get help andsupport. Another problem is older carerswho are not familiar with computers and

can’t get information when a website address is the onlyreference point. Employers aren’t always aware of the carersin their companies and there is a lack of understanding ofcarers’ problems from professionals, especially now thatbudgets are reduced and not ring fenced.

Name: Annie Dransfield Location: Leeds

I care for my son aged 34. I also care formy mother who had a stroke and myfather who has Alzheimer's. Althoughthey’re both in care homes I still have acaring role as I deal with their paperworkand finances. For me, caring is hard workyet rewarding. I enjoy the time I spendwith my son. We laugh together and cry

together – he has a wonderful sense of humour. It’s all thepractical 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 theirlife.

Name: Martha Wiseman Location: London

I became a carer for my mother at the ageof fourteen when she had a seriousnervous breakdown. As time passed, theseverity of mental health problems partlygave way to vascular dementia, and caringfor my mum was then much more practicaland protective as she became frail andmuch more vulnerable. At times I also

supported my grandfather and father as their healthdeteriorated in older age. The hard emotional and physicalgraft of caring is often unacknowledged, especially if you’recaring without support from friends, family and agencies. Abig challenge is also the complexity and political stinginess ofthe UK benefit system.

A chat with the chair

Congratulations on being elected chair. Tell us about yourinvolvement in caring.My passion for caring and the role of carers comes frompersonal experience. At the age of eleven I contracted a life-threatening bone disease and for a year I was cared for by myparents. I was utterly dependent on them to do everything forme. Now the tables have turned and I am helping my 91 yearold mum maintain her independence, in her own home in theNorth of England.

How did you get involved with Carers UK?I became a member in summer 2012 and joined the board atthe end of 2012. Apart from being a carer myself, it feels alogical step from my previous experiences as a disability rightscampaigner. 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 thephysical and emotional resilience that is required to balancecaring, working and living. That’s why our Adviceline and theopportunities we provide to connect with fellow carers, are soimportant. Secondly there is the challenge of knowing what help is

available and how to access it at various stages on the caringjourney. This is why the expansion of our advice services is soimportant. 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’swhy our campaigning and the current Caring & Family FinancesInquiry are so crucial.

Do you have a message to the members of Carers UK? Caring is a fundamental part of being human. Carers UK isworking to support carers and fighting to get a fair deal forcarers. If you are able and willing to help us in our work, we areenthusiastic to use your support!

David Grayson is the new

Chair of Carers UK. David

started his working life in

marketing management but

for most of his career has

been a social entrepreneur –

starting or running a

number of public-private-

community partnerships. He

is currently Professor of

Corporate Responsibility at

the Cranfield School of

Management.


Support

One of the problems that can come withcaring is isolation. For some people caringcan mean you’re stuck in one place andunable to get out to social events. Carerstell us if they do get a bit of spare timethey can be too exhausted to do anythingwith it. They can end up cut off fromtheir usual networks of friends andfamily. Back in 1963 our founder MaryWebster described this feeling as likebeing “under house arrest.” Sadly it’s stilla common feeling for some carers, fiftyyears later. That’s why Carers UK isworking alongside our members to findnew ways to help end that isolation. Caring for someone else can be a

tough and difficult experience. All carersneed some support and back-up. Thosewho don’t get it will unfortunately runthe risk of poor health. There is plenty ofresearch evidence that shows how beinga sole carer, especially if caring round theclock, brings serious risks to your healthand well-being.

IsolationEven with the occasional support offriends and family, some carers will stillfind themselves becoming isolated.Recent market research, commissioned byCarers UK, shows that over a third ofcarers feel isolated in their caring role.Over half said that although friends andfamily are around they don’t reallyunderstand the caring situation. Justunder half also said that whilst they hadcontact with professionals, they weren'tasked about their caring role or theirneeds. Sometimes the only people whocan truly understand how that feels areother carers. That’s where Carers UKcomes in.

Much of our work is about connectingcarers with each other, to offer thatimportant emotional support that onlycarers can give each other. For exampleour online support forum is one waymembers can connect with each otherthrough the website. But it was a voiceon the end of a telephone that made adifference to Norman, one of ourmembers who was looking after his wifewith MS.

SupportAs things got tougher he had to give uphis paid job to care full time. “I didn’t feelisolated while I was able to go out towork and do caring” says Norman, “butonce I tried to be a carer full-time, I felttotally isolated because your wholenetwork’s gone.”Like many carers, Norman soon found

his existing support network dwindled.“People come round for a while but notfor long. So you really need to rebuildthat network, but you don’t know whereto look, because you think everyone elseis coping and you think it can only be methat isn’t coping.”For Norman calling Carers UK and

speaking to one of our volunteer carerswas the connection that made adifference. “It wasn’t until I came acrossCarers UK and I spoke to the Advicelineand they started talking about a life ofyour own. You start to talk to peoplewho are in a similar position to you, andyou realise there’s lots of you in thatposition.”

"I felt totally isolatedbecause your wholenetwork’s gone."

Caring can leave you isolated but help is at hand.

You’re not alone

• 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

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: [email protected] or see

timebank.org.uk/carers-together for more information.

The scheme also offers face to face mentoring if you live in

Birmingham.

Online support Marie & MikeCarers UK has teamed up with the volunteering charity Timebank on a newproject called Carers Together. We match carers who need support withvolunteer mentors who understand first hand what caring is like becausethey have cared themselves. They connect online via email and websites.

Marie cares 24/7 for her daughter and explains how regular online contactwith a mentor is helping her in her caring role.

“I don't have anyone to talk to about caring. I find it verydifficult to confide in family and friends as I feel as if I'm failingin my role or I'm making a fuss. Having someone to talk to hasreally helped me have an outlet for my thoughts and feelings.

Caring does make me feel lonely and isolated. My daughterand I are together 24/7, she is even taught at home by the localauthority so there is no respite. We tend to stay at home as shefinds going out difficult and it's just easier to stay in.

My mentor suggested I make a note each day when I accomplish an importantaction such as a phone call or sending an email. This has been very useful to me inseeing the positives that I achieve each day. They have been able to signpost me toother 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 willreally help me. I definitely feel less alone as there is someone who will listen to meand I won't be judged.”

Mike is a former carer who volunteers his time to work as an online mentorwith Carers Together.

“For the last ten years I worked in a hospice where I organisedcarer support groups so I got to know a lot about the problemsfaced by carers. I also cared for my wife for some years whenshe had cancer. I felt that I understood, from these experiences,quite a lot about caring so when I retired I decided to continueto do something in the field.

Caring can be very isolating emotionally because it can bedifficult 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 verypersonal and intimate things in an e-mail that they might find difficult to say ‘faceto face’. I get a sense that for some of them it’s a huge relief to be able to saythings that are a real burden. I find it very rewarding that carers are able to trustme with difficult and personal details about the stresses they are facing.

There are thousands of carers out there, many of whom feel lonely anduncertain about where to go for help. Often they think that they’re the only onewith the problem but if you have been a carer you will know this isn’t true. Youdon’t need to be an expert, just willing to try to see things from their point of viewand to share some of your experience.”

Caring Magazine, spring 2014

Documents

Transcript of Caring Magazine, spring 2014