Sense annual review 2009 by Sense

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live, learn and thrive. sense annual review 2009

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feel isolated and exhausted. But the right support can make 01

TAKING THE LEAD

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.

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.

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.

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.

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.

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

Chairman sense annual review 2009

Richard Brook

Chief Executive

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

sense annual review 2009

“ How everything works is different for Archie.”

ARCHIE 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 gettogethers for siblings next year.

TOUGH TIMES, SPECIAL HELP Children 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

THANKS TO YOU

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

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.

COMING IN FROM THE COLD IT ISN’T EASY FOR DEAFBLIND ADULTS WITH LEARNING DIFFICULTIES TO TRULY JOIN IN THE LIFE OF THEIR LOCAL COMMUNITY sense annual review 2009

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

SELINA 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.

OFFERING CHOICE – WHATEVER IT TAKES Sense 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.

• 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.

THANKS TO YOU

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

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

sense annual review 2009

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

EDITH “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.

DIGNITY, COMPANY, INDEPENDENCE As 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.

• 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.

THANKS TO YOU

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

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.

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

sense annual review 2009

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

LUCY 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.

A TOUGH BREAK – AND A NEW START People 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 YOU

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

A YEAR OF PROGRESS

WE’RE RIGHT BEHIND YOU

SOMEWHERE TO LIVE, LEARN AND BELONG Sense’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.

sense annual review 2009

In 2008/2009 we: • offered individually-tailored support to 309 deafblind people who live in Sense-run houses and flats. • continued to improve the quality of our services, with 89% being rated as good or excellent (up from 84% last year) by the Care Quality Commission with no services rated as poor. • received a highly commended award at the Skills for Care National Awards. Sense works in partnership with the Anne Craft Trust and has developed a range of pioneering strategies to safeguard those in our services from possible abuse. • continued to insist that the resources we offer to deafblind people should be of the highest quality: - the new SMART Centre in Birmingham provides a stimulating and interactive environment where people with congenital or acquired deafblindness can choose from a wide range of activities, both in the centre and local community. These include computer work, massage, pottery, arts and crafts, and visiting the local ice rink and rock climbing centre. - Providence Court in Exeter has been upgraded to provide state-of-the art facilities and offer a pleasant and stimulating environment for learning and socialising. • supported a group of individuals from the south east to appear in a film to promote awareness of deafblindness – who then welcomed HRH The Princess Royal to the premiere.

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Housing and support for deafblind people Number represents houses in that location Day services Outreach services Communicator guides

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Most 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.

Communicator guides

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.

In 2008/2009

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 4

• 1,224 children and adults received support from our Family Education and Advisory Service, and our outreach workers.

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. • Sense provided 91 deafblind people with a communicator guide service. A growing number of local authorities now also provide communicator guide services thanks to Sense’s campaigning and support.

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

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

• Sense provided an intervenor service to 110 children. We also offered training and support to many other intervenors who are employed by local authorities and others.

A BREATH OF FRESH AIR

A CHANCE TO BELONG Events and family days

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.

• Young people with CHARGE came together for a weekend of companionship and new experiences. “My name is Jennie, I am 18 years old and I have CHARGE,” said one young person. “I enjoyed the weekend very much, We did lots of different activities.” • 34 deafblind people and family members headed for the sun, sand and silly hats of Blackpool in July. • The Christmas party at Woodland School, Plymouth offered a sack load of treats – the hydrotherapy pool, rebound therapy on a trampoline, party games and a Christmas meal. • A conference about congenital rubella syndrome brought together deafblind people, families, practitioners and scientist to share the latest knowledge about this condition, and how individuals can be supported. • Sense Northern Ireland ran an out of school club for 24 children with dual sensory impairments.

sense annual review 2009

Branches and groups

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

Snapshots from 2008/2009:

Sense 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:

In 2008/2009:

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 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.

Another 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.

Snapshots from 2008/2009:

• We provided holidays for 143 deafblind people. Sadly this left 53 people on the waiting list • 91% of holidaymakers said they came home happy from their holiday Holidays – and where we went this year Branches

• 99% of families who responded said “it is the most significant break from caring I get”. One carer said: “I was at breaking point when my son was dropped off. I felt completely different when I picked him up. Totally refreshed.” • We ran three week-long holidays for older people where the emphasis was on supporting people’s independence, having fun and reducing the isolation that many feel.

“ I felt happy everybody took very good care of me, I liked all the people very much. I laughed lots.” A Sense holidaymaker

• Our holidays were run by 38 leaders supported by 201 volunteers who committed over 20,160 hours of their time. If valued at the level of the minimum wage this would be equivalent to a donation of £115,517. “Sense holidays are always amazing, interesting, exhausting and challenging” said one volunteer.

• Eight young deafblind people went on an `I can do it’ weekend to talk about their hopes for the future and how they can make these a reality. “It was a big step towards my independence,” said one young person. • Members of our North Wales Branch met up to listen to a drumming band, make sand sculptures on the beach and create memory books of their weekend get-together in October. • A Sibling Network was launched in June 2008, with an activity weekend for 18 brothers and sisters of deafblind people. “I had a really good time being with people who are in a similar situation to me… not having to worry about my brother” said one.

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

LISTEN UP 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.

SENSE INTERNATIONAL 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.

SPREADING THE WORD 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.

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

“ 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 annual review 2009

• 100 disabled people – including 14 deafblind people – met MPs at Westminster to lobby against the withdrawal of concessionary bus passes for deafblind people and their travelling companion – without which many people cannot travel independently. The event was organised by a deafblind woman and the mother of a deafblind young man. • In the third phase of our Fill in the Gaps campaign – which is raising awareness of the needs of older deafblind people – 5,000 copies of an information pack were sent to primary care providers, 160 came to an event to promote this and 25 attended a specialist seminar on this subject.

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 • We achieved a record 145 pieces of coverage for Deafblind Awareness Week including pieces in the Guardian and on BBC In Touch and See Hear. • Following the appointment of the New Media Coordinator Sense now has a presence on five social networking websites - Facebook, Bebo, MySpace, YouTube and Flickr. • Our Information Team dealt with 1991 enquiries – a 10% rise on the previous year. • Sense’s specialist library on deafblindness was officially named the Ian Cloke Library - after a deafblind man whose mother created the first Sense library, and worked as a volunteer on this project for over ten years.

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.

Romania

In 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.

India

We 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.

Peru

Training 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.

THANKS TO OUR AMAZING SUPPORTERS PASSIONATE, CARING, ENTHUSIASTIC, KEEN, WHOLEHEARTED, EAGER AND RARING TO GO! 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!

sense annual review 2009

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.

New recruits

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.

A cheese and ice party

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.

Undaunted 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.

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.

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 wills

Deafblind 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.

Trading talents

Like 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 FINANCES Despite 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.

sense annual review 2009

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.

KEY PEOPLE Patron Her Royal Highness The Princess Royal Chairman John Crabtree

Expenditure £m n Adults 37.0 n Children 2.0 n Older people 1.5 n Campaigning, publicity, quality improvements 1.9 n Fundraising costs 2.7 n Shops costs 8.7 n Reserved for future work 2.2 Total 56.0

Treasurer Richard Monaghan Chief Executive Richard Brook Director of Finance Derek Pernak Director of Fundraising Jane Arnell Income £m n Fees and allowances 38.4 n Statutory Grants 0.5 n Fundraising and legacies 6.3 n Shops 9.6 n Other 1.2 Total 56.0

Director of Human Resources Pete McCollin

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

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.

Director of Trading Adrian Barker

Expenditure

Income

Words: Colin Anderson and Sarah Butler Pictures: Mike Pinches, Dave Hogan and Luciana Franzolin Design: Spencer du Bois

A special thanks to our corporate and trust supporters The 29th May 1961 Charitable Trust Viscount Amory’s Charitable Trust The Anson Charitable Trust Armit Atlantic Foundation Awareness The 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 Ltd Bibendum Wine Limited Birkdale Trust For Hearing Impaired The Blair Foundation Lady Blakenham’s Charity Trust Blue Frog Ltd The Boshier-Hinton Foundation John James Bristol Foundation Bupa A & S Burton 1960 Charitable Trust Canon UK The Carpenters Company Charitable Trust The Chapman Charitable Trust Children’s Rest School of Recovery CHK Charities Ltd The Helen Jean Cope Trust Corney & Barrow Wine Bars Ltd The Peter Courtauld Charitable Trust Coutts & Co Ltd The Ronald Cruickshanks Foundation Dans le Noir Ltd Doctor & Mrs Alfred Darlington Charitable Trust Baron Davenport’s Charity Davy’s J N Derbyshire Trust The Violet Helen Dixon Charitable Trust The Dumbreck Charity Audrey Earle Charitable Trust Sir John Eastwood Foundation The Emerton-Christie Charity Dr A C Evans Discretionary Trust The Essex Youth Trust Evenlode Partnership The Eveson Charitable Trust EnviroStream International Ltd

Ernst & Young LLP G F Eyre Charitable Trust Fierce Earth Ltd FleetMilne Residential Joseph Strong Frazer Trust The GMC Trust The Good Neighbours Trust The Miss J R Griffin Trust The Walter Guinness Charitable Trust The Gurney Charitable Trust The Hadley Trust The Mabel Harper Charitable Trust Help a London Child Sir Julian Hodge Charitable Trust Hewlett-Packard Ltd HBJ Wines UK The Albert Hunt Trust Sylvia Hutchinson Trust The Hyde Park Estate Charity The Ken & Sylvia Hymas Charitable Trust The Lady Hind Trust The Estate of Helen Eunice Johnson The Lillie C Johnson Charitable Trust JNJ Financial Management Ltd Jo Malone Limited Johnson Matthey Plc The Petronella Keeling Charitable Trust KPMG LLP The Beatrice Laing Trust Land Securities Group Miss W E Lawrence 1973 Charitable Settlement Mrs Vera Leigh’s Charity Lions Club of Keynsham LloydsTSB Foundation for England & Wales National Board Lombard Merchant Taylors’ Company Charities Fund Metcalfe Smith Trust The Mickleham Trust The Andrew Mitchell Christian Charitable Trust Mrs Joyce Mary Mountain Deceased The D’Oyly Carte Charitable Trust Misys Plc Nailsea Town Centre Ltd Neal’s Yard Dairy Orange UK The Peacock Charitable Trust Pearl Group Limited

The Misses C M Pearson & M V Williams Charitable Trust Penrose Financial Ltd The Pettifer Group The P F Charitable Trust Pillsbury Winthrop Shaw Pittman LLP The Platinum Trust The George & Esmee Pollitzer Settlement Portal Gallery The H R Pratt Boorman Family Foundation Princess Anne’s Charities The Recycling Factory Red Rose Charitable Trust Regenersis plc Resolution plc Rococo Chocolates The Royal Bank of Scotland SAY Arts Entertainment SFIA Educational Trust Slaughter & May Smith Charitable Trust The 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 Trust The 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 Trust Turner Media Group The Valentine Charitable Trust Sylvia Waddilove Foundation UK Bruce Wake Charitable Trust The Lewis Ward Trust Waitrose Garfield Weston Foundation Wildnet Group DRI Williams Trust Wragge & Co LLP Wychwood Charitable Trust Vinohrad Wines The Elizabeth & Prince Zaiger Trust

WHERE TO FIND US

YOUR SUPPORT Your support for Sense can make an enormous difference to a deafblind person and their family. Please accept my gift of £15 £25 £40 Other £ towards Sense’s work with deafblind people. I enclose a cheque/postal order/CAF charity voucher made payable to Sense. Or please debit my: Mastercard Visa American Express CAF Charity Card Maestro

Sense Tel: 0845 127 0060 Fax: 0845 127 0061 Text: 0845 127 0062 E-Mail: info@sense.org.uk Website: www.sense.org.uk

Card Number Expiry Date

Maestro issue number

Security code*

*The last 3 digits of the number on the back of your card.

Sense International Tel: 020 7520 0980 Fax: 020 7520 0985 E-Mail: info@senseinternational.org.uk Website: www.senseinternational.org.uk

Signature Date Title

Name

Sense Cymru Tel: 0845 127 0090 Fax: 0845 127 0091 Text: 0845 127 0092 E-Mail: cymruenquiries@sense.org.uk

Address Postcode Gift Aid Please tick here if you would like Sense to reclaim the tax you have paid on this and any future donations you make – this means that your gift will be worth almost a third more! In order for Sense to reclaim the tax you have paid, you must have paid income or capital gains tax in the UK equal to the amount that will be claimed (currently 28p for each £1 you give) Occasionally Sense benefits from exchanging supporter information with other charities. If you would prefer not to hear from them, please tick this box. Please return to Sense, 101 Pentonville Road, London N4 3BR Thank you for your support!

Sense Northern Ireland Tel: 028 9083 3430 Fax: 028 90 84 4232 Text: 028 9083 3430 E-Mail: senseni@sense.org.uk

Sense 101 Pentonville Road, London N1 9LG Tel: 0845 127 0060 Fax: 0845 127 0061 Minicom: 0845 127 0062 Email: info@sense.org.uk Website: www@sense.org.uk Registered charity number: 289868 Company number: 1825301