Sense annual review 2009

PASSIONATE

PRACTICALPROGRE

SSIVESense Annual Review 2009

01 sense annual review 2009

It is hugely

challengingfor deafblind people to communicate with others, move around safely and live independently.

For over

fifty years Sense has pioneeredground breaking ways to help deafblind people live, learn and thrive.

Many of the barriers that deafblind people face are

actually caused by society – not by their disability. Sense challenges this.

Sense

continually reviews and updates its knowledge and practice so that we can support deafblind people in the most effective ways.

Many families of deafblind people

feel isolatedand exhausted. But the right support can make a huge difference.

To achieve this we will also work closely with our sister organisation, Sense Scotland – and develop our international role through our partnership with Sense International which works in some of the poorest countries in the world.

We are working in difficult economic times, and while there have been many challenges over the past year we have received wonderful support from our funders and supporters. We are extremely grateful for their backing and look forward to their ongoing contribution and involvement in our vital work. We also thank our trustees, staff and volunteers: their enthusiasm, commitment and sheer hard work make a huge impact on the lives of deafblind people.

For us, making a difference means making a meaningful contribution to the lives of deafblind people and their families – and this review highlights how we have done this over the last 12 months. Over the next year we expect to build on these achievements using our new strategy as the guiding force for what we will achieve.

John Crabtree Richard BrookChairman Chief Executive

For most of us the idea of living without sight and hearing doesn’t bear thinking about. How does a deafblind child learn to walk, to talk, to play? How can a young person make friends or find their way in the world? How does an elderly person living at home cope with the hours of loneliness?

More than 240,000 deafblind people in the UK face these challenges every day. While many have a little residual sight or hearing, others are completely deaf and blind – and it is this combination of sight and hearing loss which creates unique difficulties for deafblind people.

This is why Sense’s specialist work, and its deep commitment to deafblind people, are so important. Sense enables deafblind people to learn, to develop vital life skills and make the best use of their remaining senses so they can reach their full potential. Sense changes lives – whether by helping a child to explore his world, supporting an adult to live independently or by helping an older person with failing sight and hearing rebuild shattered confidence.

In my time as Sense’s Patron I have been privileged to meet many deafblind people and their families, and I have always been heartened by what individuals can achieve – given the right support. I have also been impressed by the sheer hard work, professionalism and care of the Sense staff I have met. Their work – and your vital support – make a huge difference to the lives of deafblind people.

HRH The Princess Royal


Since Sense was born 50 years ago it has been highly successful at developing services, campaigning for change and supporting families. But deafblind people still face an uphill struggle. Too many families have to battle to get the right support for their children; deafblind adults still struggle to be active members of their communities and increasingly older deafblind people face lonely, difficult lives.

Sense’s support and services make a crucial difference in helping people to cope. This review describes some of the ways we are working with individuals, families and carers in providing direct services – and campaigning so that their choices and rights as citizens are increasingly respected. This proactive approach is expressed in our new strategy which was launched in April. We are determined that over the next five years we will tackle the distressing issues outlined above. We are in the process of changing Sense’s structure so that we can meet our ambitious new plans - and continue to meet the evolving needs of deafblind people as we work in an ever-changing social care landscape.

TAKING THE LEAD

“ How everything works is different for Archie.”

FAR TOO MANY FAMILIES STILL HAVE TO BATTLE TO GET THE RIGHT HELP FOR THEIR DEAFBLIND CHILD

sense annual review 2009

FAMILIES FIGHT FOR HELP

Archie likes to play the piano, holding his ear near to the keyboard as his fingers run up and down the keys. At one thirty in the morning.

He also loves swimming, bouncing high with his brother on the trampoline, riding the ghost train at the funfair and causing a commotion – especially if there is an audience. He doesn’t like wearing his hearing aids, cooperating with doctors or using his knife and fork unless he has to.

“Archie has very strong ideas about what he does and doesn’t want”, says his mum, Andrea. “He is very particular about a lot of things – for example, how much contact he wants with other people, when he wants to be busy and when he just wants to chill out. How everything works is different for Archie.”

“When he was young we felt under a lot of pressure to do things with him in a certain way – this child has to learn this, or eat that, which was exhausting for us. Now we concentrate on what is right for Archie, what makes him happy.”

“It’s been hard to get the right balance but I do think we’ve got used to it now – although it has been a long and painful process. But if he wants to get up in the night, as long as he is safe and reasonably quiet, then that is ok.”

• Many children with CHARGE are born with multiple difficulties - including sight and hearing impairments, heart problems and feeding difficulties.

• Sense’s Family and Education Advice Service has provided vital information and support to Archie and his family.

• Sense’s family days, events and conferences bring families together for mutual support, to share experiences and have fun.

• Archie went on a Sense holiday for the first time this year, giving his family a much-needed break.

• Archie’s brother, Louis is planning to go to one of Sense’s get-togethers for siblings next year.

ARCHIE

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TOUGH TIMES, SPECIAL HELPChildren who are born with vision and hearing impairments face a tough start to life. Exploring the world around them, finding a way to communicate their needs and learning to trust people can be immensely difficult. Many children will also have other physical and learning disabilities to deal with. Some will spend large parts of their early life in hospital following surgery or illness.

For children like this, it is vital that they get help as early as possible. Sense specialists have the expertise to provide assessments of a child’s needs and – in partnership with parents and carers - put together programmes that will help them to learn and grow. This support continues throughout the child’s life, especially during key periods of change – such as finding an appropriate school for a child, helping parents and others put together a child’s educational statement , and making plans for when the young person leaves

school to move into adult life. Many families are under enormous strain. Caring for a deafblind child or adult can be extremely demanding and this affects the whole family. Many feel isolated and exhausted, worn down by seemingly endless struggles to get the right help.

“Why does everything have to be such a fight?” said one mother recently.

Sense workers do everything they can to help families in this position. They listen, they support, they understand the challenges that deafblind children face. They work in partnership with other service providers – such as local authorities – and when necessary they will negotiate on a family’s behalf. Sense also offers a wide range of activities – including our membership scheme, local branches, Saturday clubs and family days. These offer families crucial opportunities to share information and experiences, to offer mutual support, and to realise that they are not alone with the challenges they face.

THANKS TO YOUIt is thanks to the generous support of trusts, companies and individual donors that Sense can offer specialist services for deafblind children and their families.

“ As she crosses the shop floor to gather up new stock, other staff greet her and wave hello.”

IT ISN’T EASY FOR DEAFBLIND ADULTS WITH LEARNING DIFFICULTIES TO TRULY JOIN IN THE LIFE OF THEIR LOCAL COMMUNITY


COMING IN FROM THE COLD

At the age of 26 Selina has just started work experience, and she is thrilled. For the first time she has real responsibility and she’s enormously proud of her Tesco uniform and staff name badge. As she crosses the shop floor on her way to gather up new stock for sorting, other staff greet her and wave hello. Her bubbly personality means that everyone knows her, and throughout her shift she shares jokes and laughs with her colleagues.

Selina is lucky. Because she’s deafblind and has learning difficulties her options as an adult could be seriously limited. Most of us take it for granted that we’ll work, develop relationships with friends, learn new skills, and enjoy our leisure time, but for deafblind adults with learning difficulties there are major barriers to participating in everyday community life.

The Community Access Project (CAP) is based in Thanet and works closely with deafblind people who live in Sense houses to explore ways of taking part in community life. They’ve found that while Tesco and other organisations are supportive of CAP, others continue to turn away deafblind people with learning difficulties: the team has struggled to find a gym willing to set up a fitness class, for example. They’ll persist but there’s still a long way to go before every deafblind person has an equal right to participate in everyday life.

• All the deafblind people involved in the Community Access Project have been supported to participate in different aspects of community life.

• As they have started to put forward their own ideas and plans they have noticeably grown in confidence and assertiveness.

• The next challenge for the Community Access Project is to support deafblind people with more profound disabilities to participate in community life.

• Selina lives in a Sense house where she is supported to live as independently as possible.

SELINA

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OFFERING CHOICE – WHATEVER IT TAKESSense believes passionately that each deafblind individual should – as far as humanly possible – be able to choose the support and lifestyle that is right for them. Our specialist services enable deafblind people to live as independently as possible, offering a range of supported housing, educational, employment and leisure opportunities that are built around each individual’s needs and wishes.

Sense’s staff work closely with each deafblind person, often getting to know them extremely well. Some individuals, like Selina, are able to express their wishes very clearly given support and encouragement. Others find it enormously difficult to communicate their desires and wishes and they may become very stressed and anxious. Sense works carefully, sensitively and patiently with each individual – learning how they prefer to communicate, how they like to spend their time

and so on – so they do not become frustrated and anxious in the first place. We are pioneers in this field.

Some disabled people – especially those with profound disabilities – will need the support of a skilled advocate when decisions about their futures are being made. The Mental Capacity Act (2005) established the new role of Independent Mental Capacity Advocate and Sense – thanks to funding from the Department of Health – has provided training and information to 136 advocates and over 60 families. This drew upon our considerable experience of best practice in communicating with, and providing advocacy for, people who have little or no formal communication. Guidelines have also been published on our website.

THANKS TO YOUThe Community Access Project has been supported by a generous grant of £20,000 from Kent County Council.

“ I can talk a hind leg off a donkey but don’t get much chance to do that.”

WITHOUT THE RIGHT SUPPORT, OLDER PEOPLE WITH FAILING SIGHT AND HEARING CAN LEAD LONELY, DIFFICULT LIVES


THE INVISIBLE GENERATION

“My name is Edith Elizabeth Hayes. I shall be 96 soon. Nothing wrong with my brain and nothing wrong with my tongue. I can talk a hind leg off a donkey but don’t get much chance to do that.

I am very hard of hearing. If I’ve not got my hearing aids in, I can’t hear at all. You really have to shout for me to hear, and I think it’s a terrible affliction. It’s something that just happens, you suddenly realise you’re saying “pardon or what did you say”? Also my sight is slowly fading entirely. It’s like a thick fog, is the only way I can explain it.

I spend many, many hours on my own. I feel a prisoner. I mean, I’ve outlived most of my friends now. Luckily, my friend Pam pops in to see me - and I’ve got such happy memories. I pick a year, and say “now let’s see what happened that year”.

Since I’ve met Alison from Sense it has made a big difference. She has been determined to do something for me and comes to see me each month. Recently for example, after my hearing aids got lost in the post she got the audiologist round to check my ears so that I can be fitted with new ones – so hopefully I’ll be able to hear a bit more.”

• Alison Asafu-Adjaye, who is deaf herself, is the Older Persons Outreach Worker and supports 60 older deafblind people in the London area.

• She helps Edith with her correspondence, liaises with other professionals on her behalf and often stops for a chat.

• Alison supports professionals from other organisations to develop the specialist skills needed to help older deafblind people.

• Sense organised three holidays for 18 older deafblind people last year. “At home it can be lonely, but on holiday I met new friends” said one holidaymaker.

EDITH DIGNITY, COMPANY, INDEPENDENCEAs people get older, more and more don’t see and hear too well. In fact, about one in 20 people over the age of 75 have enough hearing and sight loss to be considered deafblind. For many of these people life can be a lonely struggle. Looking after yourself, moving around safely, staying in touch with friends - all these things become increasingly hard.

Another problem is that many of the services that support older people, from medical care to social services, have little understanding of deafblindness. This means that difficulties - and potential remedies - are overlooked. For example, it is not uncommon for isolated older people with dual sensory loss to become disorientated and confused. This can be misdiagnosed as dementia and it may be decided that there is no choice but that the older person will have to go into residential care.

But there is a great deal that can be done to help older people to enjoy a better quality of life. Sense provides specialist support and information to enable older people to continue to live as independently as possible. Our outreach workers carry out assessments of an older person’s needs, and organise appropriate services and support for them. Communicator guides for example, are people who provide communication support, offer practical help at home, and enable a deafblind person to get out and about – perhaps to go to the pub or to visit the doctors.

In some parts of the country Sense has set up forums for people with acquired deafblindness – including many older people – which bring people together for friendship, information and support. We also campaign vigorously for older people to receive the support they are entitled to. Our Fill in the Gaps campaign has been raising awareness amongst carers – both families and professionals – and showing how older people can be supported and empowered. THANKS TO YOU

Alison’s role supporting older deafblind people has been made possible thanks to the help of the Bridge House Trust. 09

MANY OF THE BARRIERS DEAFBLIND PEOPLE FACE ARE CAUSED BY SOCIETY – NOT BY THEIR DISABILITY


BARRIERS TO CITIZENSHIP

“ Lucy has no way of crossing the road without risking her life”

Lucy Jaques lives directly opposite the village shop, a short walk from the stop where the bus brings her home from work. It sounds convenient but Lucy has no way of crossing the road without risking her life: she is deafblind and cannot tell if a car is approaching. Ashby, Lucy’s guide dog, can only guide her to the kerb – once there it’s down to her to decide when to cross.

Lucy has asked her local council for a crossing but to no avail because they’ve assessed her road as low risk. Until her council sees sense, she has to book assistance whenever she wants to cross the road, or to wait patiently until a passer-by sees her card asking for help. Lucy is frustrated at the council’s ignorance but determined to persuade them that they must provide a safe crossing.

Luckily Lucy is an old hand at campaigning so she won’t be put off easily: earlier this year she led a successful lobby of parliament demanding that it reinstate the right of disabled people to a free bus pass valid at any time of the day, and a matching pass for a companion. She says: “It’s hard work, with there always being constant issues, though it was good having other deafblind people involved in the national bus campaign – locally it’s just me.”

• Lucy has received training and support from Sense to become an active campaigner on her own behalf.

• Last year Sense received enquiries and requests for help from nearly 500 people with Usher and their families – many of whom we have been in contact with for many years

• Sense supports a group called Hearing and Sight Impaired UK which brings people with acquired deafblindness together for information, support and to socialise.

LUCY A TOUGH BREAK – AND A NEW STARTPeople with acquired deafblindness have to deal with a huge change in their lives when their sight and/or hearing become impaired. Some will have lived with healthy sight and hearing, but then have to make massive adjustments to their changed circumstances. Others will have already learned to live with one sensory impairment, but then as a result of a condition, illness or accident find that both their senses are affected.

People who have Usher syndrome for example, will have grown up as Deaf or hard of hearing, but then receive the devastating diagnosis that they are also losing their sight. This is caused by a condition called retinitis pigmentosa which causes night blindness and tunnel vision – although its severity and progress does vary from person to person.

This can be a huge blow, and not surprisingly many people can become very scared and depressed.

Sense plays a vital role in providing information and support to these individuals and their families – and by helping them to start to think positively about the future again. It can take a while – and some people will still go through bad patches from time to time – but many have picked themselves up and started over with the support of Sense.

We know many people with acquired deafblindness who have built active, interesting, and fulfilling lives for themselves. Many have gone into further education, found a job, travelled, got together with a partner, perhaps had a family. They have also become increasingly assertive about tackling the barriers that they face in their everyday lives. For example, many services and amenities in the UK have not been built to be accessible to people with sensory impairments. Sense provides support, guidance and encouragement to enable deafblind people to campaign on issues like this – and many others.

THANKS TO YOUSense’s work with people with acquired deafblindness is only possible because of the generous support of trusts, companies and individual donors. 11

WE’RE RIGHT BEHIND YOUMost of the children, adults and older people that Sense support, and their families and carers, are living in their own homes. While some people will get very good support from local authorities and services, many find it an uphill struggle to get the help they need – and are entitled to. Far too many families are still pushed to the point of breakdown by the huge demands of supporting a deafblind child or adult. And thousands of older people with sight and hearing problems still lead difficult lives.

Sense’s outreach workers are specialists who provide vital support and backing to individuals and families. They offer specialist assessments, and in the case of a young child for example, may suggest a programme for that child to follow. They offer information and advice – including information about the local services someone may benefit from – and frequently negotiate and advocate on someone’s behalf.

Raising awareness of deafblindness is another important part of their role through providing training, and working closely in partnership with fellow professionals from other agencies.

In 2008/2009•1,224childrenandadultsreceivedsupportfrom ourFamilyEducationandAdvisoryService,and ouroutreachworkers.

Communicator guides Communicator guides are people who offer communication support, guiding skills and practical help – such as help with shopping or dealing with mail – to enable deafblind people to continue to live independently. For older people in particular, continuing to live safely at home, to get out and about and stay in touch with friends and family can be very difficult – and a communicator guide can provide a vital lifeline.

In 2008/2009•Senseprovided91deafblindpeoplewithacommunicatorguideservice.AgrowingnumberoflocalauthoritiesnowalsoprovidecommunicatorguideservicesthankstoSense’scampaigningandsupport.

Intervenors It can be a huge challenge for children or adults born deafblind to participate in learning opportunities at home, in school and in other settings. Intervenors work one-to-one, promoting each person’s development based on an assessment of their individual needs and skills. For example, children are encouraged to develop new skills through co-active play, and tactile and sensory stimulation, and adults are helped to develop their communication and independence skills and use local community resources.

In 2008/2009•Senseprovidedanintervenorserviceto110children.Wealsoofferedtrainingandsupporttomanyotherintervenorswhoareemployedbylocalauthorities andothers.

A YEAR OF PROGRESS

SOMEWHERE TO LIVE, LEARN AND BELONGSense’s specialist services enable people who are born deafblind to live as independently and fully as possible – offering a range of high quality and flexible housing, educational, employment and leisure opportunities. These range from houses where individuals have very high support needs to accommodation where people require a lower level of support to live independently.

We also provide a range of day services and resource centres around the UK – where individuals are supported to choose from a wide range of activities and programmes. These aim to help people to develop their communication and living skills and to provide opportunities for self expression and achievement through all sorts of activities – arts and craft, sport and exercise, sensory stimulation and many more. We also provide vocational training, and support people to participate as fully as possible in their local communities.

In2008/2009we:•offeredindividually-tailoredsupportto309deafblindpeoplewholiveinSense-runhousesandflats.

•continuedtoimprovethequalityofourservices,with89%beingratedasgoodorexcellent(upfrom84%lastyear)bytheCareQualityCommissionwithnoservicesratedaspoor.

•receivedahighlycommendedawardattheSkillsforCareNationalAwards.SenseworksinpartnershipwiththeAnneCraftTrustandhasdevelopedarangeofpioneeringstrategiestosafeguardthoseinourservicesfrompossibleabuse.

•continuedtoinsistthattheresourcesweoffertodeafblindpeopleshouldbeofthehighestquality:-thenewSMARTCentreinBirminghamprovidesastimulatingandinteractiveenvironmentwherepeoplewithcongenitaloracquireddeafblindnesscanchoosefromawiderangeofactivities,bothinthecentreandlocalcommunity.Theseincludecomputerwork,massage,pottery,artsandcrafts,andvisitingthelocalicerinkandrockclimbingcentre.-ProvidenceCourtinExeterhasbeenupgradedtoprovidestate-of-theartfacilitiesandofferapleasantandstimulatingenvironmentforlearningandsocialising.

•supportedagroupofindividualsfromthesoutheasttoappearinafilmtopromoteawarenessofdeafblindness–whothenwelcomedHRHThePrincessRoyaltothepremiere.

“89% of our services were rated as good or excellent by the Care Quality Commission – with no services rated as poor”


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Housing and support for deafblind peopleNumber represents houses in that locationDay servicesOutreach servicesCommunicator guides

One of the hardest aspects of deafblindness – and of supporting someone who is deafblind – is the sense of isolation and loneliness this can bring. It can be very challenging for a deafblind person to communicate and connect with others; many families describe how they often feel they are battling on alone; and older people can go days and even weeks without speaking to anyone.

Sense Membership offers people a sense of belonging, the chance to be more actively involved in our work, plus the chance to receive our magazine Talking Sense which is provided in seven different alternative formats.

• Sense membership has risen to 1,781members – a growth of 10% in the last year.

• Our new five year strategy was developed with the involvement of deafblind people and extensive consultation with members.

Sense holidays give deafblind people the chance to get away from it all, experience new things, make new friends and have fun. Whether it is rock climbing, canoeing, having a barbecue or just chatting with friends, these activities are designed to build confidence and independence.

Our holidays also give families and carers a much-needed break from the often demanding role of supporting a deafblind person.

In2008/2009:•Weprovidedholidaysfor143deafblindpeople.Sadly thisleft53peopleonthewaitinglist

•91%ofholidaymakerssaidtheycamehomehappy fromtheirholiday

•99%offamilieswhorespondedsaid“itisthemost significantbreakfromcaringIget”.Onecarersaid: “Iwasatbreakingpointwhenmysonwasdroppedoff. IfeltcompletelydifferentwhenIpickedhimup. Totallyrefreshed.”

•Weranthreeweek-longholidaysforolderpeople wheretheemphasiswasonsupportingpeople’s independence,havingfunandreducingtheisolation thatmanyfeel.

•Ourholidayswererunby38leaderssupportedby 201volunteerswhocommittedover20,160hoursof theirtime.Ifvaluedattheleveloftheminimumwage thiswouldbeequivalenttoadonationof£115,517. “Senseholidaysarealwaysamazing,interesting, exhaustingandchallenging”saidonevolunteer.

Events and family daysAnother vital way that people are able to come together to gain strength is though our extensive programme of events and family days. Last year, 1,420 deafblind people and their families attended over 60 events - from Saturday clubs to family days – which offered information, support, friendship and fun.

Snapshotsfrom2008/2009:•YoungpeoplewithCHARGEcametogetherfora weekendofcompanionshipandnewexperiences.“My nameisJennie,Iam18yearsoldandIhaveCHARGE,” saidoneyoungperson.“Ienjoyedtheweekendvery much,Wedidlotsofdifferentactivities.”

•34deafblindpeopleandfamilymembersheadedfor thesun,sandandsillyhatsofBlackpoolinJuly.

•TheChristmaspartyatWoodlandSchool,Plymouth offeredasackloadoftreats–thehydrotherapypool, reboundtherapyonatrampoline,partygamesanda Christmasmeal.

•Aconferenceaboutcongenitalrubellasyndrome broughttogetherdeafblindpeople,families, practitionersandscientisttosharethelatest knowledgeaboutthiscondition,andhowindividuals canbesupported.

•SenseNorthernIrelandrananoutofschoolclubfor24 childrenwithdualsensoryimpairments.

Branches and groupsSense supports 14 local branches and networks and a range of other groups across the country. These enable people to come together for mutual support, information sharing and friendship in different parts of the country, or in relation to a particular issue:

Snapshotsfrom2008/2009:•Eightyoungdeafblindpeoplewentonan`Icandoit’ weekendtotalkabouttheirhopesforthefutureand howtheycanmaketheseareality.“Itwasabigstep towardsmyindependence,”saidoneyoungperson.

•MembersofourNorthWalesBranchmetuptolisten toadrummingband,makesandsculpturesonthe beachandcreatememorybooksoftheirweekend get-togetherinOctober.

•ASiblingNetworkwaslaunchedinJune2008,with anactivityweekendfor18brothersandsistersof deafblindpeople.“Ihadareallygoodtimebeing withpeoplewhoareinasimilarsituationtome… nothavingtoworryaboutmybrother”saidone.

A CHANCE TO BELONG

A BREATH OF FRESH AIR

“ Really enjoy being involved and a member of Sense – you enrich my life!”

A Sense member

“ I felt happy everybody took very good care of me, I liked all the people very much.

I laughed lots.” A Sense holidaymakersense annual review 2009 15

Holidays – and where we went this yearBranches

SENSE INTERNATIONAL

Increasingly we are empowering deafblind people to campaign on their own behalf – supporting them to lobby their MPS and tackle service providers to take their needs into account. An uphill struggle sometimes but the fight goes on.

Snapshots from 2008/2209

•100disabledpeople–including14deafblindpeople–metMPsatWestminstertolobbyagainstthewithdrawalofconcessionarybuspassesfordeafblindpeopleandtheirtravellingcompanion–withoutwhichmanypeoplecannottravelindependently.Theeventwasorganisedbyadeafblindwomanandthemotherofadeafblindyoungman.

•InthethirdphaseofourFillintheGapscampaign–whichisraisingawarenessoftheneedsofolderdeafblindpeople–5,000copiesofaninformationpackweresenttoprimarycareproviders,160cametoaneventtopromotethisand25attendedaspecialistseminaronthissubject.

LISTEN UP

“ I will take more time to speak to my deafblind patients and ask them what kind of support they feel they need”

Medical practitioner following a training event

Sense International supports the development of services for deafblind people throughout the world. It is an ambitious goal but a vital one. In many places deafblindness is not understood, services are non-existent and deafblind people and their families struggle on in sometimes desperate circumstances.

Sense International draws upon the many years’ experience of deafblindness that exists within Sense. It offers this specialist expertise to enable partner organizations to set up their own sustainable services.

2008/2009 highlights

East Africa Our partners are providing community-based rehabilitation services to 338 deafblind people, up 56% from last year. Sense International (East Africa) has also formed a new partnership with Perkins International.

RomaniaIn Bucharest and Oradea, 7,934 newborn babies had their vision and hearing screened (an increase of 27% from last year), and were referred to an Early Intervention Centre where necessary. The Government has established a national curriculum for teachers of deafblind children, and Sense International (Romania) continued to raise a significant portion of its budget through dedicated fundraising, securing nearly £36,000 from a mix of individual, trust and statutory donors.

IndiaWe continued to support four Regional Learning Centres which provided specialised training, mentoring, planning and leadership to over 75 local organisations. Sense International (India) raised 27% of its budget from sources within India, in spite of the economic downturn, and conducted the first-ever national conference on deafblindness.

PeruTraining on deafblindness was provided to 72 special educators in Peru, who are now able to identify and work with deafblind children in their classrooms.

Sense works in partnership with Sense International – see the inside back cover for contact details.

Sense campaigns vigorously for a better deal for deafblind people, focusing on the issues which our members tell us matter to them most. We push for the rights, services and choices that individuals need to live ordinary, independent and fulfilled lives.

Another barrier that deafblind people and their families face to getting the right support is that most people – from the general public to service providers – have never heard of deaflindness, or how to help a deafblind person. Lack of awareness also makes it harder for Sense to raise funds for much-needed services.

Sense’s Communications Team strives to make the public, and a range of targeted audiences, much more aware of the needs of deafblind people and the work of Sense. It also responds to large numbers of requests for information about deafblind-related issues and provides this though a range of media.

Snapshots from 2008/2209

•Weachievedarecord145piecesofcoverageforDeafblindAwarenessWeekincludingpiecesintheGuardianandonBBCInTouchandSeeHear.

•FollowingtheappointmentoftheNewMediaCoordinatorSensenowhasapresenceonfivesocialnetworkingwebsites-Facebook,Bebo,MySpace,YouTubeandFlickr.

•OurInformationTeamdealtwith1991enquiries– a10%riseonthepreviousyear.

•Sense’sspecialistlibraryondeafblindnesswasofficiallynamedtheIanClokeLibrary-afteradeafblindmanwhosemothercreatedthefirstSenselibrary,andworkedasavolunteeronthisprojectforovertenyears. 17 sense annual review 2009

SPREADING THE WORD

Words are simply not enough to describe the commitment of our Sense supporters. Helping us to raise more than a staggering £6 million last year, we are hugely grateful to the individuals, groups and organisations who have passionately fundraised for Sense. Through a myriad of events, our supporters have given everything. It’s hard to find a way to express our heartfelt gratitude – but we’d like to start with two words from the bottom of our hearts – Thank You!

A cheese and ice partyUndaunted by the chilly December weather, our supporters tied on their skates for the annual Sense in the City ice challenge supported by business partners including Bluefrog, Penrose Financial, Slaughter and May, and Turner Broadcasting. And a Cheese and Wine auction evening hosted by the Corporate Development Board saw support from city friends like Ernst & Young, KPMG and Bupa – as well as wine and cheese experts Olly Smith and pop- star-turned farmer, Blur’s Alex James.

A second successful year of our unique Vision 5K family runs saw summer races in Leeds, Birmingham, Bristol and London, with some famous faces firing the starting pistol. Sir Jimmy Saville, singer Paul Young, Leeds midfielder Andy Hughes, TV handyman Tommy Walsh and Bristol rugby player Kevin Maggs led runners, walkers and wheelchair users. Many people chose to take part blindfolded, and deafblind people from our supported living homes and day services also took part – helping people to understand why deafblind people need your support.

Best foot forward From swimming, running and cycling to singing, climbing and ice-skating, some of our supporters will go to any lengths to raise funds. Over 350 runners braved the Flora London Marathon and April showers for us. From British soldiers training in Basra’s ferocious heat, to seasoned runners like Aurelio Belo taking part in his fifth marathon for Sense, their achievements were amazing – and generated loads of newspaper and radio coverage to help us spread the word about Sense’s work.

Reaching a new personal peak, Birmingham businessman David Neale climbed the Matterhorn in July and – even further from home shores – a team of 30 business people trekked to Everest’s base camp, led by our chairman, John Crabtree. This was John’s 10th trek and over the years these adventures have raised more than £1Million.

New recruits For many of our supporters, charity truly begins at home. Our television appeal featuring deafblind boy Eliot has been seen by 28 million viewers. This has helped us recruit 1,800 new monthly supporters so that we now have 15,000 regular donors – which helps us to plan our future services and use donations as effectively as possible.

Gifts in willsDeafblind people very much depend on their remaining senses – which inspired us to create our unique rose-scented bookmark to encourage individuals to remember deafblind people in their legacies. More than 100 special individuals remembered Sense in their wills, which will help us to support deafblind people in the future. We will continue to raise the profile of legacy gifts, since without these much of our work simply would not happen.

THANKS TO OUR AMAZING SUPPORTERSPASSIONATE, CARING, ENTHUSIASTIC, KEEN, WHOLEHEARTED, EAGER AND RARING TO GO! All through the year our corporate

donors and partners have continued to dig deep and work with us despite a tough business climate. Over 1,200 people gave as part of payroll giving, donating £100,000 directly to us. While Schroder’s financial managers jogged the streets of New York for its annual marathon, MD Robin Stoakley and a team of four colleagues raised over £20,000 – which their company matched.

Another famous face became the distinctive voice of our BBC Radio 4 Appeal. Richard Briers, who has been a keen supporter for our campaigning work for older people, helped us reach many of their six million listeners, raising £25,000 in the process.

sense annual review 2009 19

Trading talentsLike all the rest of the high street, Sense Trading has been battling bravely. Two brand new shops in Nuneaton and Felixstowe rung up our total to 78 shops. While 1,100 volunteers giving 8,800 voluntary hours helped Sense build a strong platform for the future, new niche areas of business including online and specialist stores are truly paving the way in charity retailing. A badge of pride for us was Sense Trading regaining Investors in People accreditation for our 250 staff. Coupled with achieving our best ever sales and profits, we all have a lot to say thank you for.

OUR FINANCESDespite the financial recession that hit us during the year, our staff, volunteers and supporters did a tremendous job in making sure that we achieved our income target. Total income received in England, Wales and Northern Ireland reached £56m – an increase of £1m over 2007/8.

Fees and statutory grants, our main areas of income, earned us £38.9m, up by 2.5% on the previous year, allowing us to keep pace with inflation.

Although legacies fell by £500k to £1.4m, income from fundraising improved by £70k and shop sales increased by £820k to produce a combined income of £14.5m.

As a result, we were able to increase our services for deafblind people during the year as well as continuing our work on campaigning, public awareness and staff development programmes.

We spent £40.5m providing services for children, adults and older people – up from £38.8m last year – whilst investment in campaigning, public awareness and staff development was similar to last year at £1.9m.

This information represents a brief summary of the financial performance for Sense and has been extracted from the consolidated accounts for the year ended 31 March 2009. The summary may not contain sufficient information to allow for a full understanding of the financial affairs of the organisation. For further information the consolidated Report and Accounts should be consulted. They are available free on request from Sense, 101 Pentonville Road, London N1 9LG.

Telephone 0845 127 0060 (voice), 0845 127 0062 (text).

The Report and Accounts have been independently audited by PricewaterhouseCoopers LLP and are unqualified. They were approved by the trustees on 14 July 2009.

PatronHer Royal Highness The Princess Royal

ChairmanJohn Crabtree

TreasurerRichard Monaghan

Chief ExecutiveRichard Brook

Director of FinanceDerek Pernak

Director of FundraisingJane Arnell

Director of TradingAdrian Barker

Director of Human ResourcesPete McCollin

The 29th May 1961 Charitable Trust

Viscount Amory’s Charitable Trust

The Anson Charitable Trust

ArmitAtlantic FoundationAwarenessThe Ballinger Charitable Trust

Peter Barker-Mill Memorial Charity

Lord Barnby’s Foundation

The Misses Barrie Charitable Trust

The Bartle Family Charitable Trust

Paul Bassham Charitable Settlement

BBC Children in Need (Cymru)

Bestbier for Cheese LtdBibendum Wine Limited

Birkdale Trust For Hearing Impaired

The Blair FoundationLady Blakenham’s Charity Trust

Blue Frog LtdThe Boshier-Hinton Foundation

John James Bristol Foundation

BupaA & S Burton 1960 Charitable Trust

Canon UKThe Carpenters Company Charitable Trust

The Chapman Charitable Trust

Children’s Rest School of Recovery

CHK Charities LtdThe Helen Jean Cope Trust

Corney & Barrow Wine Bars Ltd

The Peter Courtauld Charitable Trust

Coutts & Co LtdThe Ronald Cruickshanks Foundation

Dans le Noir LtdDoctor & Mrs Alfred Darlington Charitable Trust

Baron Davenport’s Charity

Davy’sJ N Derbyshire TrustThe Violet Helen Dixon Charitable Trust

The Dumbreck CharityAudrey Earle Charitable Trust

Sir John Eastwood Foundation

The Emerton-Christie Charity

Dr A C Evans Discretionary Trust

The Essex Youth TrustEvenlode Partnership The Eveson Charitable Trust

EnviroStream International Ltd

Ernst & Young LLPG F Eyre Charitable Trust

Fierce Earth LtdFleetMilne Residential Joseph Strong Frazer Trust

The GMC TrustThe Good Neighbours Trust

The Miss J R Griffin Trust

The Walter Guinness Charitable Trust

The Gurney Charitable Trust

The Hadley TrustThe Mabel Harper Charitable Trust

Help a London ChildSir Julian Hodge Charitable Trust

Hewlett-Packard LtdHBJ Wines UKThe Albert Hunt TrustSylvia Hutchinson TrustThe Hyde Park Estate Charity

The Ken & Sylvia Hymas Charitable Trust

The Lady Hind TrustThe Estate of Helen Eunice Johnson

The Lillie C Johnson Charitable Trust

JNJ Financial Management Ltd

Jo Malone Limited Johnson Matthey PlcThe Petronella Keeling Charitable Trust

KPMG LLPThe Beatrice Laing Trust

Land Securities Group Miss W E Lawrence 1973 Charitable Settlement

Mrs Vera Leigh’s Charity

Lions Club of KeynshamLloydsTSB Foundation for England & Wales -

National BoardLombard Merchant Taylors’ Company Charities Fund

Metcalfe Smith TrustThe Mickleham TrustThe Andrew Mitchell Christian Charitable Trust

Mrs Joyce Mary Mountain Deceased

The D’Oyly Carte Charitable Trust

Misys PlcNailsea Town Centre LtdNeal’s Yard Dairy Orange UKThe Peacock Charitable Trust

Pearl Group Limited

The Misses C M Pearson & M V Williams

Charitable TrustPenrose Financial LtdThe Pettifer Group The P F Charitable TrustPillsbury Winthrop Shaw Pittman LLP

The Platinum Trust The George & Esmee Pollitzer Settlement

Portal GalleryThe H R Pratt Boorman Family Foundation

Princess Anne’s Charities

The Recycling FactoryRed Rose Charitable Trust

Regenersis plcResolution plcRococo ChocolatesThe Royal Bank of Scotland

SAY Arts EntertainmentSFIA Educational TrustSlaughter & May Smith Charitable TrustThe Hermione Mary Smith Charitable Trust

SPARK Ventures Sotheby’s The Geoff and Fiona Squire Foundation

Miss Doreen Stanford Trust

The Miss J K Stirrup Charitable Trust

The Peter Storrs TrustThe Connie & Albert Taylor Charitable Trust

Tesco The David Thomas Charitable Trust

Sir Jules Thorn Charitable Trust

The Annie Tranmer Charitable Trust

The Constance Travis Charitable Trust

Douglas Turner TrustTurner Media GroupThe Valentine Charitable Trust

Sylvia Waddilove Foundation UK

Bruce Wake Charitable Trust

The Lewis Ward TrustWaitroseGarfield Weston Foundation

Wildnet Group DRI Williams Trust Wragge & Co LLPWychwood Charitable Trust

Vinohrad Wines The Elizabeth & Prince Zaiger Trust

Income £mnFees and allowances 38.4 nStatutory Grants 0.5nFundraising and legacies 6.3nShops 9.6nOther 1.2Total 56.0

Expenditure £mnAdults 37.0nChildren 2.0 nOlder people 1.5nCampaigning, publicity,

quality improvements 1.9nFundraising costs 2.7nShops costs 8.7nReserved for future work 2.2 Total 56.0

Income

Expenditure

KEY PEOPLEA special thanks to our corporate and trust supporters


Sense ScotlandIf you wish to contact our sister organisation Sense Scotland please call 0141 429 0294www.sensescotland.org.uk

Words:ColinAndersonandSarahButlerPictures:MikePinches,DaveHoganandLucianaFranzolinDesign:SpencerduBois

http://www.sensescotland.org.uk

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YOUR SUPPORT

Sense Tel: 0845 127 0060 Fax: 0845 127 0061 Text: 0845 127 0062 E-Mail: [email protected]: www.sense.org.uk

Sense International Tel: 020 7520 0980Fax: 020 7520 0985E-Mail: [email protected]: www.senseinternational.org.uk

Sense CymruTel: 0845 127 0090Fax: 0845 127 0091Text: 0845 127 0092E-Mail: [email protected]

Sense Northern IrelandTel: 028 9083 3430Fax: 028 90 84 4232Text: 028 9083 3430E-Mail: [email protected]

WHERE TO FIND US

mailto:[email protected]

http://www.sense.org.uk


http://www.senseinternational.org.uk



Sense 101 Pentonville Road,London N1 9LG

Tel: 0845 127 0060Fax: 0845 127 0061Minicom: 0845 127 0062Email: [email protected]: [email protected]

Registered charity number: 289868Company number: 1825301



Documents

Sense annual review 2009