Sense Generic Word Template€¦ · Web viewTalking Sense - Spring 2020. Contents. 4 News. Sense’s response to the Coronavirus emergency; Sense’s new enagement campaign, introducing

Talking Sense - Spring 2020

Contents4 NewsSense’s response to the Coronavirus emergency; Sense’s new enagement campaign,

introducing Talking Sense’s new editorial board.

9 Chief Executive Exciting times in Wales.

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12 Sense InternationalReporting back on My Time to Shine.

13 Fundraising newsSuper supporters of TouchBase Pears; lodging their support; Jude feels the love; Mia’s

voyage of discovery.

18 Campaigns MPs say hello to people with complex disabilities at Sense parliamentary event.

21 Focus on Sense CymruTouchBase Cymru is a very particular place; Communicator Guides offer special time; how

two women with Usher found each other; my new home in the valley; support for children

in Wales; root and branch.

42 Leila’s life with Sense

44 Weekend for siblingsA chance to share the good times and the bad.


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50 More than a haircut

53 Three men in a flat

55 Tinsel and Twiglets

57 As I see it Editorial team: Colin Anderson and Shaanvir Rehal

Volume 65, No 3 Winter 2019

Please let us have your news and views for the next Talking Sense by 1 June 2020

Heartening tales

Firstly, I would like to extend my best wishes in these difficult times to all Talking Sense

readers – especially to those people, both families and staff, who are caring for someone

with complex disabilities. I hope you are all managing to cope and to stay well. Sense is

doing everything it can to respond to this crisis, and you can read about all the

arrangements that are being made.


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Times like this can feel pretty overwhelming, so it can sometimes be a good idea to think

about happier things and times. Fortunately, this issue of Talking Sense contains lots of

stories that will hopefully lift your spirits – where the voices of the people we support come

through loud and clear.

In this issue, we’ve focussed on the excellent work that Sense Cymru is doing. I visited

Wales in February, and everywhere I went was struck by the kindness, warmth and

commitment of the people I met – from the staff at TouchBase Cymru, to the new

supported living service in Tonypandy; from the Communicator Guide service to the busy

branch in North Wales.

You can also read heartening stories about a hairdresser who has made his salon truly

accessible to people with complex disabilities, how a group of siblings supported each

other on their weekend away, and how three young men are (gradually!) learning to

embrace their household chores.

I hope that these stories will bring a smile in these challenging times.

Colin Anderson

Editor of Talking Sense


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NewsSense’s response to the Coronavirus emergency

From Richard Kramer, Chief Executive:

Like all organisations, Coronavirus (Covid-19) is having an impact on Sense’s work.

Our focus is on ensuring the safety of the people we support and their families as well as

our staff, volunteers and supporters, whilst continuing to be there when it matters for the

people who need us.

We are closely monitoring the situation and following the guidance of Public Health

England and the UK Government, and reviewing our operations on a daily basis in light of

what is a fast-developing situation.

The support we’re providing

Our immediate priority has been to ensure that we were taking all the necessary steps to

keep the people we support safe by providing clear and consistent information to the

frontline staff working in our services. And to provide clear guidance to the people who visit

our services and centres to help prevent the spread of the virus.

Our residential care and supported living accommodation continue to run as normal.

Following government guidance, we continue to provide our day opportunities and

colleges facilities as we continue to provide vital support to families. We are reviewing this

on a daily basis, and all decisions will be taken in the best interests of our staff and the

people we support We continue to provide information and advice and the helpline


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remains open. Accessible information in relation to coronavirus is available here:

https://www.sense.org.uk/get-support/information-and-advice/accessible-information-on-

coronavirus/

In accordance with the advice on social distancing, we have taken the decision to suspend

our sports and arts activities, as well as our buddying and short breaks programmes.

Currently we are no longer provide face-to-face activities for our children and families and

have been trialling providing support using other initiatives, including platforms such as

Facebook Live, to continue to deliver vital support to families.

Our public facing programmes at our community centre in Birmingham, Sense TouchBase

Pears, are now also closed to the public.

Visiting us

To ensure the safety of the people we support, staff and volunteers we are regrettably

unable to allow any visitors without express permission.

Fundraising events

Given the latest advice from the Government about limiting social contact, some of our

fundraising events have been postponed. If this affects you, our Events team will be in

touch to update you.

If you have any questions about events, please contact our events team at

[email protected]

Shops and retail

Our shops raise vital funds for the charity and we want to thank you for your continued

support. However, due to the unfolding situation, and with the health and wellbeing of our

staff and customers a priority, we have taken the decision to temporarily close them. We


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do also sell our new and donated goods online. To support us visit:

https://www.sense.org.uk/support-us/shop/

Thank you for your continued support

Please know how grateful we are to you for providing such amazing support to Sense. If

you would like to make a donation in this period of uncertainty, please visit our donation

page at https://www.sense.org.uk/support-us/donate/

Richard Kramer

Keep in touch!

At this time more than ever, we’d like to keep connected with our members and valued

supporters. So if you don’t currently receive email communications from us and you’d like

to stay in touch with key updates on Sense’s work as well as ways you can help, including

how you can volunter, make a donation, or support our campaigns, then do let us know.

To do this, please email [email protected] including your

name and postcode in the email, to let us know you’d like to be added to our

emailing list. You can unsubscribe at any time and you can read our privacy

notice at www.sense.org.uk/privacy

Mr Tyrese’s Sign School Learning a new language often appears at the top of people’s hit list, particularly when

looking for a new challenge. With that in mind, Sense is putting together a campaign

inviting people to learn British Sign Language (BSL).

Through social media, people will be able to sign up to Sense Sign School, fronted by 15-

year-old Tyrese or Mr Tyrese to his students once they sign up! They will then receive a


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series of emails over five days teaching simple signs on topics like family, food and drink

and entertainment.

Sense has supported Tyrese and his family since he was a baby and, as a BSL user, he

was thrilled to be involved.

We hope the campaign engages and motivates people who may never have heard of

Sense before to join us in breaking down communication barriers and get involved in

supporting Sense’s vital work.

We’ll be trialling the campaign soon, before deciding the best time to fully launch it. Given

that many people are looking for interesting things to do at the moment, we’re hoping

there’ll be lots of sign ups!

Introducing a new Editorial Board for Talking SenseOne of the most important goals for Talking Sense is that it reflects the needs, experiences

and wishes of our members. After all, back in 1955 when Sense began, the magazine was

one of the first ways that a group of parents were able to share information about their

children who had been born deafblind.


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In order to make sure that the magazine continues to offer what people need, an Editorial

Board has been set up. This is made up of individuals with a wide range of experience and

interests who will be able to guide the contents of the magazine going forward. They are:

Ashling Barve, who is parent of a child who is deafblind and a Sense Trustee.

Annette Bodsworth, who has Usher Syndome and has a great deal of experience of

representing the needs of people who are deafblind with her local council in Essex.

Josie Bell, who has many years’ experience of supporting people who are deafblind

their families and Sense’s branches.

Amy Kavanagh, who is Policy and Public Affairs Advisor in Sense’s Public Policy

Team.

Amanda Santer, who is Deputy Director of Engagement and is currently involved in

research into membership.

Colin Anderson, who is Editor of Talking Sense.

The Board will review the effectiveness of the current approach of the magazine, and

come up with ideas for new content and ways of doing things. The first meeting was held

in January and already this has born fruit – we agreed that the

voices of people with complex disabilities should come through more strongly in the

magazine – and hopefully you will see that this has been addressed in this current issue.

If you would like to make any comments or suggestions about Talking Sense do please

get in touch – we’d love to hear from you. Email: [email protected]


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Chief ExecutiveAn exciting time for Wales In these difficult times, I am delighted that we have been able to focus on something really

positive in this issue of Talking Sense – the great work that Sense is doing in Wales.

There is so much to be proud of and it is really encouraging that we have seen our work

there grow from strength to strength. Over the last three years, we have doubled the

number of people we are in contact with and have ambitious plans for growth.

We now provide services for 147 adults and children and offer information and advice to a

further 110 people – as well as supporting families and carers.

One of my roles is to be Sense’s Responsible Individual for our services in Wales. This

means I have a formal role in overseeing the management of our new housing service,

ensuring it is safe and well-run and that it complies with standards and regulations. I also

need to account to the Care Inspectorate in Wales – an onerous responsibility!

This means that I am expected to regularly visit our first supported living service in Wales

which is based in Tonypandy. I need to be satisfied that the support is focused on the

individuals and promotes their wellbeing and personal outcomes. With my Responsible

Individual hat on, I have been very impressed with the spacious and modern physical

environment at the home. We also have a brand new team in place and new people

moving into the home. The kindness and creativity of our staff shone through, in particular,

the exceptional ways in which they support people to make choices and get involved in

activities around their home. We also work alongside the families who regularly offer

suggestions and ideas.

I have been many times to Sense TouchBase in Caerphilly, most recently for HRH, The

Princess Royal’s visit last November. From my perspective, what makes our work at

TouchBase Cymru so special – along with all Sense’s services – is how our dedicated

staff teams work carefully, sensitively and patiently with each individual – learning how


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they prefer to communicate, to spend their time and express themselves. I believe we are

pioneers in this field.

The key to our success in Wales is partnerships. We nurture the support of family

networks, friends and relationships through active engagement. For example, we have

strengthened our links with the North Wales Branch who had previously felt neglected.

Now spend time talking with the Branch, listening to the families and we are working

together to make housing plans for the future.

We have also spent time building links with commissioners across Wales. It takes time to

engage with them and develop that position of trust with all our stakeholders.

Commissioners are satisfied that we understand the landscape in Wales and that we are

committed to working with them. They have also seen our successes first-hand and that

we are committed to recruiting staff teams from the local communities that we work in.

That success is now extending to our charity shops and we have opened our first two

shops in Wales, delivering new shops in the heart of local communities.

It is an exciting time to be part of Sense Cymru!


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Sense International Thank you for giving children with deafblindness in Kenya their Chance To Shine

We’re excited to announce that Sense International’s Chance To Shine appeal has raised

an amazing £350K This will fund sight and hearing tests for children in rural Kenya, and

provide vital support to children with deafblindness in their early years. All eligible

donations will be match funded by the UK government.

Over the first three months of the year, our generous supporters have been busy

fundraising - from giving clothes to our Sense and Sense International shops, donations

from individuals, businesses, trusts and foundations, to hosting baking events and

spreading the word on social media. Sadly our Chance To Shine ball at the Savoy hotel in

London had to be cancelled due to the Corinavirus lockdown, but will be re-scheduled for

February 2021.

Thanks to your help, Sense International will transform the lives of children identified with

deafblindness in the counties of Kwale and Garissa in rural Kenya, where these children

rarely get the support they need. Without support, these children would face a lifetime of

isolation, struggling with mobility and communication, and unable to form the most basic

connections with those around them.


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The Chance To Shine appeal will help children like Charity, who has cerebral palsy and

partial blindness. Charity’s mother, Linet, heard about a clinic run by Sense International

Kenya which supports families like hers. The team diagnosed Charity and very quickly

started a programme of specialist therapy.

Linet says: “I am appreciative of the support Sense International has provided to my child.

She has improved so much and the therapy sessions are so much fun.” Linet is proud of

the progress her daughter is making and is finally beginning to look to the future with hope.

Match funding from the UK government will provide vital support to children with

deafblindness in rural Kenya and public donations will go towards Sense Interntional’s

work around the world.

Alison Marshall, Director of Sense International, said: “We would like to say a huge thank

you to each and every supporter for getting involved in the Chance To Shine appeal.

We’ve been overwhelmed by the fantastic response, which will help to change the lives of

children with deafblindness in rural Kenya. We look forward to telling you how the money

is spent when the project starts later in the year.”

For more information about the Chance To Shine appeal, visit:

https://www.senseinternational.org.uk/chance-to-shine

Fundraising news Stupendous supporters of Sense TouchBase Pears The Sense family is extending a huge thank you to three grant-making trusts who between

them donated £160,000 to Sense Touchbase Pears (STBP) in Birmingham.


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These stupendous gifts from The Pears Foundation, The Edward Cadbury Charitable

Trust and The Michael Marsh Charitable Trust have enabled Sense to upgrade the ground

floor of our flagship centre.

A new Sense College is now housed in a secure bespoke area, with dedicated

classrooms, a sensory area and space for multi-sensory projects. Sense College at STBP

currently supports 15 students.

We have also been able to create new, larger spaces to improve accessibility and reach

for our Arts projects. This includes a large performance studio, a dedicated arts-zone, and

a music studio where disabled and non-disabled artists can come together.

In addition, The Eveson Charitable Trust provided a grant to employ an Arts administrator

to support the Sense Arts department.

Lodging their support Sense staff at TouchBase Southeast centre in Barnet were delighted to welcome

representatives from a number of Lodges and trusts in February – including the the Red

Cross of Constantine who delivered a generous gift of £2,500. The visitors explored the

centre, and met many of the individuals and staff who come together there. Every week,

up to 40 adults with complex disabilities take part in a stimulating programme of

education, leisure and life skill activities. There are also r art and music classes, a sensory


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room for relaxation and stimulation, a hydrotherapy pool, a gym, a training kitchen and IT-

based programmes.

Each person has their own timetable, chooses the things they would like to do and is

supported to use the form of communication they prefer – whether that be British Sign

Language, using objects of reference, hand-under-hand signing, Makaton or some

individual combination of these.

After this, our charitable friends walked across to The Sense Family Centre, where a

sensory room, play room, music room, and relaxed sitting room offer parents and children

a welcoming, warm and adapted environment where children can thrive.

Jude feels the loveIn the last issue of Talking Sense we told you the story of one-year-old Jude who was the

focus of our Christmas Appeal. Jude was born with a rare condition called Schinzel-

Giedion Syndrome and has many complex medical needs, including a severe hearing and

visual impairment.

Sense has already had a big impact on the lives of Jude, his parents Emma and Steve and

five-year-old brother Fraser. Sue Fawcett, Sense MSI Family Practitioner, has visited the

family at home regularly since Jude was just four months old. She has been able to show

the family how to better understand Jude and how to connect and build a bond with him

through sensory play and developing touch cues to communicate.


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"My personal wish and hope for him’, says Emma, Jude’s mum, “is just that we are able to

communicate at a level where he knows that we love him and he can hopefully show us

some type of appreciation and affection back. It sounds really naff and cheesy but all I

want is for him to know that we love him, that’s all that really matters for children and for

anybody.“

We asked our supporters to help fill a play sack full of specialist sensory toys, so that

another child like Jude can start to interact and build a bond with the people who love

them. Jude’s story clearly touched the hearts of our supporters and the appeal has raised

a phenomenal £315,853 so far!

A huge thank you to everyone who supported our appeal to help give a child like Jude, the

chance to explore the world, to communicate, and most importantly of all, to feel the love

around them.

Mia’s voyage of discoveryOn Sense Holidays, life adapts to the needs of children like 12-year-old Mia, rather than

the other way round.

Mia is blind and has a development condition which means she can speak, but only in

short phrases. She also has cerebral palsy, which affects her movement, muscle tone and

coordination, so she uses a wheelchair. It’s difficult to find places Mia can visit and can

take weeks of planning to find somewhere suitable for her.


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But on her super Sense Holiday in the Yorkshire Dales , Mia wasn’t held back by her

disabilities. Everything was tailored to her and her fellow holidaymakers needs – so Mia

could take part in all sorts of activities.

And Mia certainly made the most of her week away – enjoying a steam train ride, gliding

down a dry ski slope on a tube and best of all going sailing for the first time.. She loved the

feeling of the boat turning in the wind and whizzing around the lake.

Experiences like this just wouldn’t be possible for children who are deafblind or have

complex disabilities if it wasn’t for Sense Holidays – and our fantastic supporters who

make it all possible.

To support our Holiday Appeal and help another child like Mia enjoy a voyage of

discovery, please visit www.sense.org.uk/holiday or call our Supporter Services team on

0300 330 9257 (Mon-Fri; 9am to 5pm) Thank you!

Mia enjoys a sailing trip and a hug from her holiday volunteers.

Spinathon53Six PureGyms in Harrogate and around Newcastle have taken on our new RUN53

challenge and held a 53 minute spinathon - raising around £800 for Sense.

PureGym’s Regional Manager said feedback was brilliant with people commenting that the

gyms had a real buzz after the activity. These gyms (and hopefully more) plan to repeat

the challenge later in the year and have a raft of other fundraising events in the pipeline.

Thank you so much PureGym!


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CampaignsMPs Say Hello to Sense One of the barriers that people with deafblindness and other complex disabilities often

face, is that politicians and policymakers have never met anyone with their particular

needs. And in Sense’s experience, the most powerful way to address this is for politicians

to meet, spend time with and chat with someone who has sensory impairments. It’s a

powerful way to open ears and eyes.

There is a new government in place, with many new MPs in Parliament, and it is important

that we build bridges with them as soon as possible. So in February, Sense’s Policy and

Campaigns team hosted a “Say Hello To Sense” event in the House of Commons where

MPs and Peers had the opportunity to meet Catherine, Tony, Maria and Daniel who all

have sensory impairments.

They showed the politicians the different methods they use to communicate – from British

Sign Language to the Deafblind Manual Alphabet – and described the challenges they

face in their everyday lives. The MPs learned how to spell their names in British Sign


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Language and each received a customised braille name sticker made for their

parliamentary passes.

Catherine Field takes up the story: “Monday 24 February 2020 finally dawned and I grew

more and more excited to attend the historic parliamentary event for Sense. I was keen

and ready to promote better communication and services for the deafblind community.

It was a fantastic day and I thoroughly enjoyed interacting with everyone! I felt confident

and passionate about showcasing the work of Sense and the importance of matching

deafblind people’s varying communication needs.

I was able to teach the MPs and Peers to fingerspell their names – I hope they remember

how to do it and that they find time to learn some more BSL!

The MPs also had an opportunity to see people using Deafblind Manual and Braille to

communicate.

Overall, I had a fabulous time mixing with the MPs and Peers from the House of Lords,

notably Baroness Tanni Grey-Thompson who has won several gold and silver Paralympic

medals. She inspired me to demonstrate my belief in the importance of BSL hands-on

signing, and encouraged me to continue promoting more awareness of this type of

communication.

This event was brilliant – a big `high five’ to Sense for organising such an important and

amazing day!”

A huge thank you to the 169 people who emailed an invite to their MP! 22

Parliamentarians came along to Say Hello to Sense, and the Policy and Campaigns team

have developed some new relationships with MPs as a result. Several will be visiting

Sense shops and services in their area and the MPs told us how much they enjoyed

meeting everyone and learning about the work Sense does.


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Sign up to be a Sense Campaigner

Help us to champion the rights of everyone living with complex disabilities, including those

who are deafblind: https://www.sense.org.uk/contact/contact-campaigns/

Catherine with Dr Lisa Cameron MP, Sense Parliamentarian of the Year.

Daniel created braille labels for the politicians

Sarah White teaches fingerspelling to Dame Rosie Winterton MP


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Focus on Sense Cymru 1Moving forward in Wales

As in most parts of the UK, social care is very much under pressure in Wales. It has the

highest proportion of disabled people in the UK (26%) and is also the country with the

oldest population in the UK – which has put considerable pressure on local councils.

According to the Welsh Local Government Association, 17 councils have overspent by

£53m this year to meet increasing social care bills.

Despite this, there are many examples of inspiring and innovative practice – not least by

Sense Cymru who have developed, and are developing, a range of much-needed and

innovative services. “There have been cutbacks over the last years,” says Angela Graham,

who is Operational Manager for the south of Wales, but we have been able to keep

moving forward. We’ve got a good name, and commissioners listen to us.”

In this focus on Sense Cymru you can read about this progress in action:

• TouchBase Cymru is offering specialist support to people with complex disabilities

who were often previously neglected.


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• The first supported living service for seven individuals has opened at Tonypandy in

the Rhondda Valley

• A thriving Communicator Guide service is providing practical and emotional support

across Wales.

• Children and families are receiving specialist help and advice.

• The North Wales Branch is bringing individuals and families together for friendship

and support.


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Did you know?

• Wales has a population 3.23 million and has a total area of just over 8,000 square

miles. It has over 1,680 miles of coastline and is largely mountainous, especially in north

and central areas.

• Welsh is spoken by 20% of the population

• Wales is said to contain more castles per mile than any country in the world.

Focus on Sense Cymru 2

A very particular place

For people with complex disabilities, and often additional health needs, TouchBase Cymru

has created a haven of friendship and support.

John needs very particular people, and an environment that is carefully controlled, in

order to live his life. When he was just two years old he caught meningitis which caused

substantial brain injury so that all of his senses are now impaired. His health is fragile and

his family, and the people who support him, need to keep a close, watchful eye on him.

But that doesn’t mean he can’t enjoy life, try new experiences and make choices about

what he would like to do. Today, at Sense’s TouchBase Cymru centre in Caerphilly for


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example, he has joined a sensory stimulation group where he can experience and enjoy all

sorts of music, rhythms, colours and touch.

The session is run by Dawn Goman, who is skilled in running these classes, and she

adapts the activities to each person in the group. John’s sense of touch is impaired so he

enjoys being touched and held quite firmly and grins as she helps him to raise his arms in

time with the drumming.

Most of the individuals who attend the TouchBase Cymru centre have complex disabilities

and many also have health needs that require careful attention. As well as the Sense staff

at the centre, many will also be supported by healthcare workers who work alongside the

Sense staff throughout the day, or perhaps come in at certain times – to give medication

for example, or to provide suction or oxygen.

“There’s a small team of people who work with John, and his day has to be timed quite

carefully,” says his mum, Karen. “John needs a set team of people who he knows, and

they know him, really really well. They also need to know what to do if John starts to choke

which is a risk for him.”

Because of health needs like these, most of the people who attend the centre are funded,

or part-funded, by the NHS, rather than by local authorities who are often cash strapped.

This does at least mean that more people can attend the centre than might otherwise be

the case, and the numbers have grown steadily since the centre opened four years ago.


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Meeting individual health needs is crucial, but that isn’t all the centre is about. “For me, it’s

about each person having meaningful activities that are tailored to their needs,” says Kate

Wright who is the centre manager. “That’s something we’ve worked very hard to achieve.

We want people to feel `this is somewhere I’d really like to come for the day’ when they

arrive.”

Karen would second this. “I think John loves coming here,” she says. “The sessions that

he takes part in are excellent – lots of music, lots of sensory stimulation, focusing on

breathing and touch. Each time there is a change in the activity, someone will say `John,

we are going to do this now, and this is what will happen next. So it becomes routine and

John begins to anticipate. He learns that things move on, they change, different sounds

mean different things – like the microwave ping means that his dinner is coming.

“It’s all about learning in different ways. It gives John a sense of where he is and what

he’s doing. He’s in a group but also the centre of attention. Somebody is always saying

hello to him, someone is always doing something with him.”

John communicates by using his eyes and is being supported to use a piece of equipment

on the computer called an eye gaze where can choose between, for example, four pictures

of activities he might like to do.

TouchBase Cymru has proved to be a much-needed resource in this part of South Wales,

especially for young people with complex disabilities who are leaving school – who might

otherwise have had to move into a nursing home or care home. One young woman for

example, who now attends TouchBase Cymru, had a very bad experience in a care home

and had to return to her family where her behaviour was often very challenging, including

hurting herself quite badly.

Understandably her parents had lost all trust in the care system and, at first, were only

prepared for their daughter to attend the centre for one day each week. But gradually their

trust and confidence grew and their daughter now comes to the centre every day where

she enjoys a structured, stimulating programme – and her behaviour is greatly reduced.


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“For me, it’s about each person having meaningful activities that are tailored to each

person’s needs,” says Kate Wright,” with a key emphasis on person centred planning and

a place to feel happy and safe to be independent.”

John communicates by using his eyes and is being supported to use a piece of equipment

on the computer called an eye gaze where can choose between, for example, four pictures

of activities he might like to do.

With thanks

TouchBase Cymru has been able to buy lots of extra equipment and improve facilities

thanks to its generous supporters. These include: Western Energy, ith

AFM Maintenance, Pugh’s Garden Centre, Greggs Foundation, Aneurin Bevan Health

Board (ABHB), Millennium Stadium Charitable Trust and Caerphilly Comicon.


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“This is my time”

There’s a lot more to being a Communicator Guide than offering practical support – as

Colin Anderson found out when he met Darran and Communicator Guide Vicky.

Funnily enough, Darran and Vicky first worked together in Morrisons in Cardiff over 15

years ago. She worked on the shop floor and he was an HR Manager, a job he loved.

Their paths crossed sometimes, enjoyed a bit of banter and then their lives moved on.

Later, Darran’s life took an unexpected swerve. “About 12 years ago my sight suddenly got

worse,” he says, “due to a condition called stargardts dystrophy diesease. In three months

I lost the sight in my left eye and now have much reduced central vision in the right eye.”


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“My life changed completely,” he says. “I had to give up my driving licence, couldn’t work

any more and was made redundant. My relationship broke down and I moved back to

Brynmawr where my mum and sister live at the end of the street. My independence was

shot.”

“It was very tough, and it’s taken me a long time to adjust. Even now there are times that

are difficult, things that I just can’t do any more. You have to rely on someone else, and

that’s the worse part because I’ve always been very independent. Without someone like

Vicky it would be unbearable to be honest.”

At first, he received support from a social services sensory impairment team, but that

service was closed due to cuts. Fortunately Sense was able to step in and Darran has now

had a Sense Communicator Guide service for over 10 years, including four years with Val

and now over four years with Vicky.

“I get Vicky for six hours every week,” says Darran. It may not sound a lot but they make a

big difference. Sometimes we split the hours, for example if I need to go to the doctors, or

we can have a whole day so I can plan something – maybe go to the theatre which I love.

“We get on really well and have a good rapport which is important. You need to be able to

trust each other. If I’m in a familiar place I’m happy to try to find my way on my own; if I’m

feeling a bit nervous or unsteady, then Vicky is there to guide me. But she will always let

me decide what I want to do.

“Now I’m far more confident again. I know I’ve got these hours at the end of the week

which are mine. It’s my independence. It’s where I want to go, what I want to do, instead of

having to rely on other people – friends, family. That’s so important for me.”

Comm Guides across Wales

Sense Cymru has been successful in developing Communicator Guide services across

Wales for a number of years now – with contracts with most of the local authorities in north

and south Wales, and over 50 Comm Guides providing support to around 100 individuals.


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Many of these people will be older, but increasingly Sense Cymru is working with younger

people who are experiencing a range of difficulties in their lives. For example, there is a

young woman who lives near Colwyn Bay who is blind but also has autism and is being

supported to feel more confident about getting out and about in her local community.

As well as practical skills, such as guiding or being able to use sign language a Sense

Communicator Guide also needs to have good personal skills such as empathy, calmness

in challenging situations and the ability to make decisions independently. Most will have

previous experience of social care and it is important that they are matched with someone

who they will get on with – it takes time to build up that rapport and trust. “There’s a lot of

emotional support in my role,” says Vicky, “not just the practical stuff.”

How has Sense Cymru managed to make these services grow? “I think we have a good

reputation with local authorities,” says Simon Carnell, Director of Sense Cymru, “and they

do come to us for advice and information, especially for situations that are more complex.

It’s a very friendly country, it’s very much sit down face-to-face, have a chat, review the

service. And then this can springboard into developing other services.”

Tacpac

As well as offering the Communicator Guide service, Sense Cyrmu is also increasingly

providing sensory sessions to people with very complex needs who are not able to travel

to a centre. A Sense worker visits the person at home and takes a bag, called a Tacpac,

which contains all sorts of sensory stimuli – including feathers, massage oils, shiny objects

and vibrating toys

For example, one young man who lives in the Vale of Glamorgan was receiving palliative

care at home, but receiving very little stimulation. Now a Sense worker visits and offers

him a range of tactile experiences – from playing soothing music, to massaging his feet to

gently stroking his face. “He’s reaching for the sensory equipment he wants now, whereas

before he was just left in bed all day receiving nursing care,” says Angela Graham. “We`re

hoping to replicate high intensity, short sessions across Wales.”


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“Elaina who is my Comm Guide is very good, not only helping me with shopping but we

spend quite a bit of time in the car going from place to place, so we have a good laugh,

great conversations, it’s a social thing. “ Gary

Making it happen

Goal 3 in Sense’s strategy for 2019/22:

Individuals are less lonely and more connected with their communities.

.


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Speaking the same language

Getting the right support is vital – but there’s nothing like talking to someone who knows

what you are going through. Shaanvir Rehal describes how special friendship between

Leanne and Natalie has made all the difference.

For anyone, losing your vision and hearing can be an isolating and lonely experience.

Especially when this information is dropped on you by a letter in the post. This is what

happened to Leanne about seven years ago. She went to the doctors for a routine

appointment only to be told in a letter that she had Usher syndrome.

Usher syndrome is a degenerative condition that affects people’s vision and hearing

causing it to slowly worsen over time. For some people, this can start from birth but for

others, they can experience this later on in their lives and simple tasks like going to work

or visiting friends can seem difficult and daunting.

Luckily, Leanne had her family were really supportive, and after a referral, Sense came on

the scene. One of the things that concerned Leanne was how the condition would affect

her ability to work. Angela Graham, Sense’s Operations Manager for South Wales, knew

that with the right support, Leanne would be able to adapt to new ways of working. She

offered to source some specialist Usher syndrome training and support, through Sense’s

Usher team, to help both Leanne and her manager understand the condition. “She spoke

to my manager,” says Leanne, “and explained what I was entitled to, and five years later I

am still there! My manager has been very supportive and I have a taxi through Access to

Work.”

Soon after Leanne’s diagnosis, in another part of Wales, another letter arrived. This time it

was Natalie who received the news. Like Leanne, she was told that she had Usher

syndrome. “I got diagnosed with Usher Syndrome Type 2’” says Natalie, “and I was really

struggling accepting my condition. I lost all my confidence and after giving up my job it was


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even harder. Life was lonely even though my older brother also has Usher. It was hard to

talk to people that didn’t have it and no one understood at all. I felt a burden to everyone.

“So I was referred by the council to Sense and Angela came to visit me at home and gave

me loads of information as well as emotional support. Sense has been amazing. They

have helped me gain confidence and made me feel human again, that I’m not a burden to

anyone. I have a Communicator Guide every week and I’m entitled to eight hours. The

support they give is fantastic and they invite me to every event they have.”

Even with all the different types of support Sense offers, sometimes, just talking to

someone with similar experiences is the best thing. Angela knew this and, after asking

Leanne and Natalie’s permission, they exchanged numbers. They spent a little time texting

and soon arranged to meet up.

Nervously meeting each other for the first time was a huge step for both of them. Having

emotional support is important for everyone but talking to someone in a similar position to

you is invaluable. Soon Leanne and Natalie found that their shared experience opened the

door to wider conversations. “I am thankful to Natalie, say Leanne. “She is the only person

I can speak to when I am having a bad day with Ushers.”

That was about four years ago. Since then, Leanne and Natalie’s friendship has

blossomed into something special. They talk regularly and meet as often as they can with

their Sense Communicator Guides. “We have a special friendship,” says Natalie. “We

understand each other so much and it’s more like she’s my sister because we’re so

similar. We talk about everything in our lives – growing up with the condition, how it affects

us and our fears for the future. Our friendship means the world to me.”

When they first met, Leanne was concerned how her condition would affect her having a

family in the future. Since those scary first few years, Leanne fell pregnant with a daughter

she called Natalie – and when Leanne asked Natalie to be her child’s Godmother, both

knew what the answer would be.


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Loneliness can take many forms and can come from anywhere, including an unexpected

letter in the post. 53% of people with disabilities suffer from loneliness and without the right

support, the effects can be hard to deal with. Through Sense, Leanne and Natalie found

and continue to support each other. Their friendship proves that even in the most difficult

of situations, something wonderful can blossom. For them, the right support came from an

unexpected friend.


My new home in the valley


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The new supported living service in Tonypandy – the first Sense has opened in Wales –

came at the perfect time for Helene and Heather.

Helene and Heather are twins aged 52 and they had always lived at home with their

mother, not even spending any time in respite care. “Mum was always worried they

weren’t going to be looked after the same way that she had looked after them,” says their

sister Katina.

But gradually as their mum got older, this became more and more difficult. Now aged 79,

she has health difficulties of her own and also lost her partner, so that sisters Katrina and

Kay were increasingly stepping in to care for the twins.

Things finally came to a head when their mother went into hospital and Helene and

Heather needed emergency respite care – and by a stroke of luck Sense’s new supported

living service had just opened.

They have both settled in very well, and have adjoining bedrooms so they can still spend

time together when they want to. But it still took a little while for their mum to be reassured.

“Mum was very reluctant,” says Katrina, “and was dead against it at first. She felt that she

was letting them down because she couldn’t look after them anymore. But she can see

that they are well looked after, they are very comfortable, very happy over here. She has

said `I can die a happy person now.’”

Helene and Heather were the first people to move into to the new service, which is based

in a beautiful old vicarage at Tonypandy in the Rhonda Valley. Sense worked in close

collaboration with the local authority to set this up, and after a lot of planning, consultation

and hard work the new service opened in November 2019. In time, seven people will live

in the house, each supported with their own particular needs and aspirations. It’s early

days for the service in Tonypandy – but clearly it is already a happy house!

Making my new home

34-year-old Tracey also recently moved in.


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“I came and visited and thought it was a nice place. Then I moved in. I was nervous at first

but people were friendly. I got my own place now.

My mam and I decorated my room and I’ve got all my photos and bits and pieces. I like

having my own room, sitting in there watching telly. Emmerdale and Tipping Point are my

favourites.

I cook my tea, make pot noodles with hot water, make a cup of tea. My favourite is bacon

and tomatoes. Then I have a chocolate mousse for pudding. And Dandelion and Burdock

pop to drink.

Sometimes I go shopping and buy food, and bags of chips, onion rings, peas and

everything. And I go and get my hair done. At the weekends I sometimes go to Mammie’s.”


Support for children in Wales

Here’s brief snapshot of the work of Caitlin McKie, MSI Practitioner for Wales.

Caitlin works as part of the SSSCYP Team. They work with children and young people

who are deafblind (multi-sensory impaired) and those who have a single sensory

impairment and additional needs.


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Who does Caitlin support?

Caitlin has links with over 65 families and is currently working more actively with around 30

families – that’s quite a stretch for a three day week! She visits families at home but also

organises get-togethers for families – including meeting at TouchBase Cymru in

Caerphilly, hydrotherapy sessions in Penarth, a pre-school group in Cardiff and

collaborative days with Tŷ Hafan, which is a children's hospice in Barry South Wales.

She may start to support a family when the child with deafblindness is very young, or this

may come later. Families often get in touch with Sense through Sense’s Information and

Advice Team, or it might be through other agencies such a Local Authority Team, school

or RNIB. They may also get in touch with Caitlin directly if they know of other families that

are supported by Sense.

What challenges are people facing?

Often Caitlin will receive a request for help when a child is in their early months, which is

an extremely difficult time for parents. They may well feel overwhelmed and unsure of how

to support their child, so information, guidance and support are all vital in these early days.

She also receives some requests for help when a child is older – perhaps because a

family has not felt that they needed to ask for help, or has not heard of Sense before. She

also receives referrals for teenagers who may be at the point of transition, or perhaps have

been diagnosed with a progressive condition and need support with managing a change in

their vision or hearing

With children of pre-school age Caitlin will offer more home visits and one-to-one support –

usually monthly. She works closely with the family to help the child to feel safe and to start

the to-and-fro of communication. This might include introducing the child to sensory play,

stories and toys to stimulate the child. For example, this could be a story massage, where

touch helps to tell the child a story, or where objects represent things within the story – so

the child is feeling their way through the story, rather than just listening and experiencing it

that way.


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Support for the whole family

Caitlin very much sees her role as supporting the whole family, including siblings. Many

families will feel quite isolated and this is especially true in the more remote parts of

Wales. The get-togethers enable families to come together in a nice relaxed environment

which is suitable for their child – and where they can chat and get support from other

families in a similar position to them.

For more information contact [email protected]


Root and branch

Achievements, challenges, laughter and heartache – all these things are shared by the

families from the North Wales Branch. Jane Plant, who is Secretary of the Branch, spoke

to Talking Sense recently about what it means to her.

How long have you been involved in the Branch?

We first joined 15 years ago, when our son Gethin was about four – he’s 19 now! Up to

that point the group had mostly focused on campaigning for services, but we also wanted

to do more family stuff, with the onus on supporting one another and having fun. There are

now five main families who come along and other people join in some of the different

activities.

What have been your best experiences?

Gosh, there have been so many! I would say the highlights are definitely the weekends

away. We've had weekends at disability friendly hotels in North Wales, had three breaks at


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the Children's Adventure Farm Trust in Warrington, and next weekend we're all off to

Center Parks together. We're all really looking forward to that.

We also do lots of days out – we regularly go to Chester Zoo, go canoeing on the lake at

Vala, visit sensory play areas, meet for meals, go swimming and cycling…it’s hard to

remember them all.

What has Branch meant to you over the years?

It's been a massive support. We've developed such good friendships with all the familes in

the branch. To have close friends that absolutely understand 100 percent what you're

going through, that you can share information with, is priceless.

You can laugh together, you can cry together. We know that if we had any problem with

anything at all, regardless of whether it was to do with our kids, we could make contact

with each other. Last year one of our families went through the worst time imaginable,

when their daughter, Johanna, died after becoming very poorly, and I like to think that

having us here, still including them, and still being part of their family, is going to make a

massive difference to them.

When we go out somewhere, whether it be Centre Parks or bowling, you're not going to

feel like you're there on your own, because you've got people there doing exactly the

same, supporting you all the way through it.

Sounds like you have a lot of fun?

Gethin has brought so much joy and fun and knowledge into our lives, and actually, to be

able to share all that with other people, and laugh about it, and enjoy that aspect of it

means almost as much as having somebody to share all the difficult times with.

I hope that makes sense because some people don't get it. We might laugh at things that

Gethin does, and someone might say, `I think that's really sad’. But we would just say, well


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actually no, it's really funny. It’s difficult to explain, but if you've got other people that totally

get it, you can laugh at the difficult things with them, and all the funny things as well.

I wouldn't know half of what I knew if I wasn’t a parent. You know, you can do all the

courses and seminars you want, and all that. But unless you actually feel it, unless you

know living with it, you don't get it in the same way.

Have there been challenges for the Branch?

Yes, we have found it difficult to reach out to new families – although a new young family

did join us a couple of years ago. We think that is partly due to the new data protection

legislation – because there's been a big issue with getting information out to people, and

we haven't been able to access anybody's details. So people don't know about us.

Also, lot of professionals have been reluctant to pass on information about our family

group because they are worried that families will feel overwhelmed. But actually, when we

do meet up with people, they say I wish we'd known about this.

Who does what in the Branch?

We all have a role and it is very much a team effort. Catherine is the Chair at the moment,

but my husband Kevin was Chair before that. I've been the secretary for years now, so I

do a lot of the organising for activities and events. But then I’m super busy with work at the

moment so Natalie is organising the Centre Parks holiday and other people happily step in

to organise an event if it’s nearer their area or if they have time.

Kay does all the finance and the Reece's are champion fundraisers. They do all sorts of

stuff like karaoke evenings, bingo, quiz nights. Kay's done a sponsored walk or a

sponsored cycle as well. The Baileys have done awesome sponsored cycles a couple of

times, from London to Paris, then Natalie and Lee cycling from London to Amsterdam.

Natalie’s choir have done


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some singing fundraising and with Catherine and Johanna’s choir also doinga great

job .Natalie's choir have done some singing and Catherine's choir as well.

We all share all the responsibility, the challenges and the achievements, you know. And

that's why I think the family branches are so important, they're such a key part of support

to families with children with complex disabilities. And we're not just talking about the

deafblind person here, it’s also brothers and sisters, aunts and uncles, cousins – the whole

family. I think I'd be absolutely lost now without those guys in the Branch.

To find out more about the North Wales Branch please contact: [email protected]


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Volunteering My life with Sense Hi, my name is Leila Touak. I am deafblind and I am really happy to be with Sense. It is

fun and I always look forward to it!

I start support from Sense in 2004. I have Sense support workers and they are really very

nice and friendly. I have two days a week for eight hours with my support workers. I like to

go shopping, see my friends, visit the Sense office, museum, mosque and different places

in London. I am really happy to be supported every week.

I start to volunteer for Sense in 2009 at a family day. The support workers support me

there. I am really very happy. I like helping with children and families. I helped them and

played games, jumping, arts, music, sport teams and sign sessions. It was fun.


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I start volunteering in Sense shop in Barking in 2014. My work friends are really nice and

friendly. I like to help tidy the room, hangers, clothes, shoes, bags DVDs, CDs, books and

toys. I helped to put the things in bags. I go to Sense shop on Tuesdays and Fridays.

Also, I am Ambassador for Sense since 2015. I like meeting new people and new friends.

I start voluntary cheerleader at London Marathon and London Half Marathon in 2015. I

wore an orange Sense t-shirt. We cheer and see all the Sense Team were running. I really

enjoy it!

I also volunteer at Café 55 in Barnet at TouchBase Southeast. I like to help to do washing

up, dish wash, dried up, put the thing away and clean the kitchen. I clear the tables. I

helped to serve the salads, cheese, tuna, cakes with custard. I have an ID, black apron

and black polo t-shirt. I always look forward to it.

I am Deafblind Person of the Year in 2012 and Volunteer of the Year in 2016. I am very

happy to have nomination. I am really happy to hear about it and got a certificate.

I am Sense Member since 2011. I am really happy. I like to go Sense Members’ Day and

was interested in information about Sense. I have got Talking Sense magazine. I enjoyed

reading it.

Thank you,

Leila Touak


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Siblings weekendSiblings say how it is for themThe weekend break for siblings at the Whitemoor Lakes Adventure Park near Lichfield

offered plenty of excitement – from rock climbing to abseiling. But it also gave the young

people the chance to open up about their experience of living with a disabled sibling. Colin

Anderson reports.

Louise Butler, who runs Sense’s Get Out There (GOT) in Warwickshire for young people

with complex disabilities in Warwickshire, has been wanting to run a weekend for siblings

for a long time.

“I’m really passionate about sibling support, because I’m a sibling myself,” she says. “I

have an older sister with severe cerebral palsy who’s now 46, who I’ve supported

throughout my entire life really. So I know and understand the impact that being a sibling

can have.”

Sense has been running events and get togethers for siblings for some time now, where

the young people have the chance to hang out together, have fun, try some new activities

and be the centre of attention for a change. These have been a great success, but Louise

wanted to add another ingredient. “I wanted to run some supportive elements alongside

the other activities, she says, “where we could give siblings a safe space to be able to talk

about their feelings, their family life, their siblings, in a way that they might not be able to

express at home.”

“In my experience, siblings can experience all sorts of mixed emotions. I think you’ll find

that most siblings are immensely protective of their disabled siblings and would do

anything for them – I certainly was. And many will grow up to be very caring adults who

are much more tolerant and accepting of all sorts of people.


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“But there is often another side too. They grow up at an incredibly young age and can

have a lot to cope with. They can struggle, day-to-day, with things like having disturbed

sleep, having people coming to the house all the time and feeling that the needs of the

disabled sibling always come first. That’s not to say that there’s not lots of love and care in

the family. You often find that families are actually incredibly strong family units and have a

bond there that lots of other families maybe don’t have.”

Louise and Ruth Bennett Anderson, who is running the siblings weekend with her, are very

much aware that these are very sensitive issues that the young people may have never

spoken about before. So the discussion groups they have organised need to be handled

carefully, and allow the young people to go along at their own pace.

In the first session, each young person is given a canvas and asked to paint a picture that

says something about themselves. Connor, Mia, Mike, Scarlet, Cherry and Leon soon get

down to work with brushes, pens and paints, and as they do this they start to relax and

talk. With guidance from Louise and Ruth they start to describe some of the feelings they

have about having a disabled brother or sister: pride, frustration, sadness, love and

sometimes anxiety.

A number described how their sibling’s behaviour can sometimes be very difficult for them.

“If you upset my sister too much, sometimes she bites,” said one young person, “and she

will pull your hair really hard, like actually pull it properly. And she’ll go mad and she might

break things, like TVs and stuff.” Another person described how she gets scared when her

sister has a seizure and she hears the panic in her mum’s voice.

“Sometimes you have to be really brave don’t you?” says Ruth, “and it’s important that we

recognise how brave you are.” The young people look thoughtful and nod quietly.

As the day progresses all sorts of themes and issues gradually emerge. “Sometimes when

we want our friends over and stuff, we can’t really have that many sleepovers or anything”,

says one person, “because she’s there and she’ll just try and get involved and stuff with

our friends.” Others describe how they hate it when people stare: ‘I don’t like it when we’re


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going shopping and people will stare at my sister or something. People that are going to

laugh about a disabled person, they’re nothing more than jerks.”

Louise knows this feeling. “I used to be embarrassed when my sister had to be fed in

public because she’s quite a messy eater,” she says. “And I used to find that really hard

and still do sometimes. That’s really bad, but do you know what I mean? Because people

would be like, “Oh, look at her, she’s spitting her food out.’ It’s was really hard sometimes.”

Louise also shared with the young people that one of the most difficult things she struggles

with is feeling guilty. “Guilt is a big thing that you can feel as a sibling,” she says, “being

the ‘normal one’ and having expectations placed upon you to achieve good things.” She

also sometimes felt guilty when she was able to experience good things in her life, like

when she got married and had children, things that she felt – at the time – that her sister

would never experience. In fact, her sister did actually get married when she was 42, and

Louise was so thrilled to share this with her.

It might sound like this was a rather heavy weekend for the young people but far from it.

As the group got to know each other and played pool and table football together they also

shared funny stories about their siblings and the things they get up to. “My best memory is

when my brother went out in a speedboat with seven people in wheelchairs,” said one.

“They let my brother steer and he started chasing a duck around the lake. It was hilarious!”

There was also plenty of time for doing some abseiling, rock climbing and flying down the

zip wire. After the first discussion session there was a big cheer when Louise announced

that it was time for fun! Everyone got togged up in helmets and harnesses and clambered

up a high wooden tower to the launching platform. It took a lot of nerve to lean back into

the high open air and trust that the harness would hold them. But everyone took a deep

breath, stepped into the air and glided serenely back down to earth – before charging up

the tower again to go on the zip wire. There were shouts of excitement as everyone took

their turn to whizz down the wire. And as people got more confident some found their own

way to jazz it up a bit by hanging upside down and flinging their arms wide!


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In the final discussion group of the weekend the young people were asked to reflect upon

what the weekend had meant to them. They all agreed it had been fun and they had made

new friends. “When I first arrived I felt nervous and scared,” said one, and now we know

each other, I feel really happy. It’s good to talk about what we are all going through and

stuff. I’d like to meet up again.” As the discussion came to an end, Louise announced

thatthe next activity would be the challenge course and there was a big cheer! They all

rushed off to get into their gear and there was lots of laughter, jostling and shouting – they

were just kids again.

Preparing for the weekendLouise and Ruth worked with Sibs UK to prepare for the weekend and went on their

facilitator training to help them to deliver the workshops. They received guidance about a

range of things, including how to use activities to help the young people to relax and feel

able to talk, how to respond to feelings and how to bring up issues that might be worrying

them.

This can be difficult for the young people but Sibs UK feel that it is much healthier that they

recognise and acknowledge these feelings, rather than just bottling them up. “If we don’t

give them that same space to say these sorts of things,” says Louise, “then what happens

is that they just become a ball of pent-up emotion that’s got nowhere to go, and they end

up feeling bad about themselves. But if they’re given a space to be able to deal with these

feelings, then, hopefully it will increase their resilience and be better for their own mental

health in the long run.”

“This often hasn’t been available in the past,” says Lucy. “Sibs UK say that the biggest age

group of siblings who come forward for support is actually those aged over 25. Because

that’s when they potentially, get married, start their own families, then move away, that sort

of thing – and with parents getting older that’s when the realisation kind of hits home. So

what we’re trying to do is give kids the resilience, the support and the tools they need so

that we can give them some coping mechanisms for when they get older.”


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With thanks to The GMC Trust whose support enabled the Siblings Weekend to take

place.


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FeatureMore than a haircut Having a smart haircut has been a big boost for a group of individuals with complex

disabilities, reports Colin Anderson.

Getting a haircut might not seem a big deal to most of us. But for people with complex

disabilities it can be very difficult – if not impossible – to find a hairdresser who is prepared

to take the time to understand and meet their needs.

“We really struggled to find a local hairdresser who seemed prepared to offer a service to

the people we support”, says Toni Power. She is Team Leader at a Sense house in

Deeping St James near Peterborough, where six individuals with a range of disabilities

live. “Most of the hairdressers we approached didn’t seem to want to do it,” she says. “The

salons were noisy, we never saw the same hairdresser twice, and in the end a member of

staff took on the role of trimming people’s hair. Some people hadn’t had their hair cut in

public for 20 years.”

Fortunately, Toni had a good relationship with her own hairdresser, Jason Reddick. And

one day she asked if he would be prepared to cut the hair of one of the people she

supported? He said he would be happy to give it a go and an appointment was made for

the end of the day when it would be quieter.

The first person who came along was Phoebe. “Phoebe could be very defensive and

anxious about having her hair touched,” says Toni, “so we had to think carefully about how

to support her. Two members of staff accompanied her for the first visit and we discovered

that, provided she could look at a Teletubbies video on my phone, she was quite happy to

have her hair cut. We’ve since purchased a portable DVD player for her so she can watch

her favourite DVDs there.”


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Phoebe also often rocks back and forth, but Jason was not fazed by this, and was happy

to step back when it seemed that Phoebe needed a break. “At first Phoebe was just about

able to accept having a haircut,” says Toni, “but now she finds it an exciting place to go.”

Gradually the other six people who live at Deeping St James also started to go to Jason’s

salon. He is very calm and steady and – working in collaboration with support staff – varies

his approach depending on whose hair he is cutting. “One person had her hair dyed as

well as cut,” says Toni. “She had her hair dyed in her wheelchair and then we used her

hoist to lift her into the chair to have her hair rinsed. Another lady, Rosamund, takes along

a vibrating toy when she goes in to keep her calm. Sometimes she gets very upset when

she drops it but Jason is always very patient.”

“I try to be calm and go with the flow,” says Jason. “I listen to what Toni and the other staff

say, watch what they are doing and take the lead from them. If someone is moving their

arms for example, I just step back until they are ready. Each person has their own way

they like to have their hair cut.”

Today he is cutting the hair of Lawrence who has lived at Deeping St James for just over a

year. Lawrence is blind but has good hearing and makes it very clear what he does and

doesn’t like – and will shout over someone if he doesn’t want to do something.

When Toni and Jay Harper, who is the Manager of the house, first took Lawrence along to

see Jason they found that he did not like sitting in the hairdresser’s chair, shouting and

grabbing around him. “But when he went back to his wheelchair he calmed down,” says

Toni, “so he always has his haircut in his wheelchair since then.”

As he is having his haircut today, Toni and support worker Jade sit on either side of him,

helping him to feel relaxed while Jason starts to trim with the clippers before moving on to

the scissors for the top. At first, Lawrence shouts out a bit, but then he starts to grin as he

reaches up to feel his smart new haircut and puts his arms out for a cuddle. “He’s a lovely

soul,” says Toni.


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“Everyone who comes along has their own different haircut now,” says Jason, “rather than

them just having a standard trim. I treat them just the same as any other customer who

needs a nice haircut.”

Toni also firmly believes that activities like this have a much wider benefit. “It just gives

everyone the chance to go out into the community and have their haircut, just like

everyone else. All those little things build up someone’s confidence and sense of self-

worth. It also helps to build up awareness in the local community and people just get used

to seeing them around and being part of local life.

“It’s all about supporting people to achieve things that other people might think they can’t.”

With thanks to Jason Reddick who was shortlisted for Collaboration of the Year in the

2019 Sense Awards. www.jrehair.co.uk


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FeatureThree men in a flatIt took planning and persistence for three families to set up a supported living service for

their sons – but the results have really delivered.

We all know the feeling of having to wake up and work through the list of chores around

the house; doing the dishes, putting a wash on and tidying up are all part of living

independently. So is going to the pub with your mates or sitting indoors and getting a

takeaway. Alex, Alex and Gavin, all in the their mid-20’s, are now regulars at their local

pub and love a pizza night in. But it is fair to say that the more domestic side of looking

after themselves in supported living accommodation is still a work in progress!

The Supported Living Service at Hollings Lane near Rotherham has been a great success.

However, like all successes, it has not been without its challenges. It has taken three years

of planning, discussion and action for all three lads to move into the flat in November 2019.

Alex, Alex and Gavin met at Sense Centre Rotherham about five years ago and got on

famously, with similar hobbies and interests. But while everything at the centre was great,


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home life was proving a growing concern. All three men come from loving homes but their

parents were feeling increasingly worried about how their sons would be cared for in the

future.

Knowing how well the lads got on, Sense invited the families to come together and think

about the possibility of them living together in a supported living service – and a plan was

formed.

Turning this into a reality took a lot of negotiation and back and forth with the local

authority over funding, but the families stayed strong. “This was all very new for the

families, but we worked with them to have high expectations and demand nothing but the

best for their sons,” says Catherine.

After nearly a year of talks, it was time to find a property and set up the service. A perfect

flat was found where all three could have their own rooms and specific spaces in the

communal area. It was also arranged for the three men to have different sessions together

and see how they got on – which they all loved.

This project was aimed at being as person centred at possible. At each stage, the families

and the men were involved as much as possible, with the parents sitting on the interview

panel for all of the staff at Hollings Lane.

After years of work, all three have finally moved in and the results are speaking for

themselves. It has taken them a little while to adjust to some of their domestic duties, but

they are getting there! At home, Gavin was happy to grab himself a drink or a snack. Now,

whenever he goes to the kitchen, he always asks the others if they would like anything.”

Thanks to the persistence and determination of the families, all three men now have one-

to-one support until 10pm every day – which everyone celebrated with a night of dancing

at a night club.


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While the outcome for men has been brilliant, for the families, it has meant so much more.

Their relationship with their sons are now so much better. They feel closer and sleep better

at night knowing that regardless of what happens, their son will always have a home.

Sense holidays and short breaksTinsel and Turkey


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People with sensory impairments can often miss out at Christmas. So last November, a

band of holiday makers and volunteers travelled to Llandudno in Wales for the first ever

Turkey and Tinsel holiday where they could enjoy the full festive experience.

Volunteer Adam O’Riley describes a great week and holidaymakers highlight their best

bits.

Monday – Travelling to Llandudno

We arrived in the afternoon at the Four Oaks Hotel on a wind-swept day, spending the

afternoon getting settled in to our rooms and exploring the hotel and the promenade which

the hotel looked out to. After a long day travelling it was early to bed for us all!

Tuesday – `Christmas Eve’

A short coach ride to Bodafon Farm to visit the animals and learn more about how the farm

operates, and take a tractor ride.

Best bits? “Feeding and stroking the llamas – I have seen them before but have never got

up very close, to be able to stroke their woolly and springy animal hair and to feed them

with confidence too”

“Tractor Ride – a refreshing and bumpy ride with a strong smell of wet grass and cold

fresh air”

Wednesday – `Christmas day’

At breakfast we had a surprise visit from Santa who gave out presents to everyone. Today

was a free day where we could go on an adventure together and buy our Secret Santa

presents. Our group decided to go shopping in the morning and George, one of the holiday

makers, organised the bus ride.


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In the evening we had our Christmas dinner, gave out the Secret Santa presents and had

a karaoke session with some of the other hotel guests. “I loved my singing didn’t I?!” said

holiday maker Graham.

Thursday – `Boxing Day’

We drove to Erdigg House, a National Trust property on the outskirts of Wrexham for a

hearty lunch, cream tea, and a guided tour of the grounds and the house.

Best bit? “Guided tour of the Erddig House – with items to feel and smell in each room and

these brought back happy memories of utensils that my great-grandparents used to have

when I was a child. It was fun feeling them and guessing what they were. It got me all

aglow!”

Friday – travelling home

It felt like it all came to an end too soon, but as holidaymakers and volunteers travelled

back on the bus there were so many memories to savour.

Best bit? “Walking on Llandudno Pier – an exhilarating and refreshing brisk walk and

exploring what’s on the pier and its surroundings on the seafront.

It was a virtual Christmas with lasting memories!


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As I see itMaria’s moments

My name is Maria Pycio and I started at Sense TouchBase South East in August. I like

coming to Sense because I can see everyone and make friends. Staff are nice and very

helpful to me. I communicate using BSL but I also have my Voca if needed. I like learning

new signs and different ways of communicating. I am happy at the centre.

I really enjoy swimming because I can walk, jump, and kicking my legs in the water. I enjoy

taking slow walks around the pool but when my legs get tired, I like to lay on my back and

kick my legs in the water making a big SPLASH!!! This makes me laugh. However I have

to remember to take out my hearing aids and put them in my bag, to keep them safe.

In the art room I like to paint. I helped to make hand prints for TouchBase South East’s

25th anniversary. I made heart shaped salt dough decorations for St Valentine’s Day. For

Halloween I enjoyed doing pumpkin caving and making pumpkin decorations.

I love being in the training kitchen and cooking different dishes. I enjoy being in the training

kitchen because I love to cook anything with chocolate. For the 25th anniversary I helped

Hayley to make the cake for the party. On pancake day I made lots and lots of pancakes.

For Chinese New Year we made chicken chow mien noodles, homemade pork dumplings


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and a chocolate mousse!!! Was the best bit. For St Valentine’s Day I made chocolate

truffles which I had a few of.

I enjoy being in the music room and coming out of my chair. I like to play the guitar, sing

and listen to music. My favourite artist is Selena Gomez.

I enjoy coming to the centre.

Harry’s prideHarry Headland, who attends Sense Centre Rothwell near Kettering, recently had a chat

with Support Worker Elaine about what he has been up to. Harry uses British Sign

Language to communicate and this uses a different word order as you can see below.

Amanda Harry

Go where? Sense everyday, Rothwell.

Like going why? Happy meet new people, make new friends, try new things. For

example, volunteer at Deaf Connect, volunteer at hospital.

Feel what? Proud

Go where? Sense everyday.

Have meetings when? Every month.

What? I decide my future.


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Making art togetherYiannis loves bold, bright colours and shapes. He created these striking pictures by using

paper, scissors and paint in combination with using an iPad.

He was supported in this by Annette Pugh who is a professional artist from the Royal

Birmingham Society of Arts (RBSA). She worked one-to-one with him, offered him lots of

choice in terms of materials, textures, shape and guided his use of the iPad

An exhibition of his artworks - ‘Making Together’ – has been shown at Sense TouchBase

Pears and also RBSA. And the staff at the home where he lives have been looking at how

art can become a regular part of his daily life and to expand his collection of art materials.

Yiannis has found something he is great at, enjoys and makes him feel proud.


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Sign up today

Head over to sense.org.uk To join #TeamSense


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Give the gift of joy in your WillWhen you include a gift to Sense in your Will, you include joy for a child who is deafblind

or living with complex disabilities, like Jessica.

Jessica’s mum, Louise, could never have envisaged moments of joy like these when, at

two weeks old, Jessica was diagnosed with a rare condition, Tetrasomy 18p, which causes

sight loss and a variety of medical issues.

Jessica also had glue ear, which meant temporary hearing loss. Louise wondered how she

would ever be able to communicate with her little girl. Thankfully, they found Sense. For

Jessica, attending a pre-school group at her local Sense Family Centre helped her make

the most of her senses, so she could express herself and share joyful moments with her

mum.

By remembering Sense in your Will, you’ll help to make joyful moments possible for

children who are deafblind for years to come.

That’s because a gift in your Will means that Sense can give specialist support to a child

like Jessica. With early intervention, we can build on the senses they do have, help

children communicate with their family and open up their world through sensory play. It’s

this specialist support and the kindness of people like you that make magical moments

possible for children who are deafblind.

Your gift will help to ensure that every child – no matter how complex their disabilities –

can be included in life.

In the future, thanks to you, more children who are deafblind will have the chance to fulfil

their potential.

To request a FREE guide to gifts in Wills, please call Leesa Mathiesen on


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020 7014 9347 or email [email protected]

.


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