sense generic word template€¦ · web viewtalking sense - spring 2020. contents. 4 news....
TRANSCRIPT
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.
Error! No text of specified style in document.Insertdate
Page 1 of 64
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.
Error! No text of specified style in document.Insertdate
Page 2 of 64
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.
Error! No text of specified style in document.Insertdate
Page 3 of 64
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
Error! No text of specified style in document.Insertdate
Page 4 of 64
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
Error! No text of specified style in document.Insertdate
Page 5 of 64
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
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
Error! No text of specified style in document.Insertdate
Page 6 of 64
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
Error! No text of specified style in document.Insertdate
Page 7 of 64
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.
Error! No text of specified style in document.Insertdate
Page 8 of 64
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]
Error! No text of specified style in document.Insertdate
Page 9 of 64
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
Error! No text of specified style in document.Insertdate
Page 10 of 64
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!
Error! No text of specified style in document.Insertdate
Page 11 of 64
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.
Error! No text of specified style in document.Insertdate
Page 12 of 64
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.
Error! No text of specified style in document.Insertdate
Page 13 of 64
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
Error! No text of specified style in document.Insertdate
Page 14 of 64
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.
Error! No text of specified style in document.Insertdate
Page 15 of 64
"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.
Error! No text of specified style in document.Insertdate
Page 16 of 64
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!
Error! No text of specified style in document.Insertdate
Page 17 of 64
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
Error! No text of specified style in document.Insertdate
Page 18 of 64
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.
Error! No text of specified style in document.Insertdate
Page 19 of 64
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
Error! No text of specified style in document.Insertdate
Page 20 of 64
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.
Error! No text of specified style in document.Insertdate
Page 21 of 64
• 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.
Error! No text of specified style in document.Insertdate
Page 22 of 64
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
Error! No text of specified style in document.Insertdate
Page 23 of 64
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.
Error! No text of specified style in document.Insertdate
Page 24 of 64
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.
Error! No text of specified style in document.Insertdate
Page 25 of 64
“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.
Error! No text of specified style in document.Insertdate
Page 26 of 64
Focus on Sense Cymru 3
“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.”
Error! No text of specified style in document.Insertdate
Page 27 of 64
“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.
Error! No text of specified style in document.Insertdate
Page 28 of 64
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.”
Error! No text of specified style in document.Insertdate
Page 29 of 64
“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.
.
Error! No text of specified style in document.Insertdate
Page 30 of 64
Focus on Sense Cymru 4
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
Error! No text of specified style in document.Insertdate
Page 31 of 64
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.
Error! No text of specified style in document.Insertdate
Page 32 of 64
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.
Focus on Sense Cymru 5
My new home in the valley
Error! No text of specified style in document.Insertdate
Page 33 of 64
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.
Error! No text of specified style in document.Insertdate
Page 34 of 64
“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.”
Focus on Sense Cymru 6
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.
Error! No text of specified style in document.Insertdate
Page 35 of 64
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.
Error! No text of specified style in document.Insertdate
Page 36 of 64
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]
Focus on Sense Cymru 7
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
Error! No text of specified style in document.Insertdate
Page 37 of 64
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
Error! No text of specified style in document.Insertdate
Page 38 of 64
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
Error! No text of specified style in document.Insertdate
Page 39 of 64
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]
Error! No text of specified style in document.Insertdate
Page 40 of 64
Error! No text of specified style in document.Insertdate
Page 41 of 64
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.
Error! No text of specified style in document.Insertdate
Page 42 of 64
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
Error! No text of specified style in document.Insertdate
Page 43 of 64
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.
Error! No text of specified style in document.Insertdate
Page 44 of 64
“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
Error! No text of specified style in document.Insertdate
Page 45 of 64
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!
Error! No text of specified style in document.Insertdate
Page 46 of 64
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.”
Error! No text of specified style in document.Insertdate
Page 47 of 64
With thanks to The GMC Trust whose support enabled the Siblings Weekend to take
place.
Error! No text of specified style in document.Insertdate
Page 48 of 64
Error! No text of specified style in document.Insertdate
Page 49 of 64
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.”
Error! No text of specified style in document.Insertdate
Page 50 of 64
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.
Error! No text of specified style in document.Insertdate
Page 51 of 64
“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
Error! No text of specified style in document.Insertdate
Page 52 of 64
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,
Error! No text of specified style in document.Insertdate
Page 53 of 64
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.
Error! No text of specified style in document.Insertdate
Page 54 of 64
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
Error! No text of specified style in document.Insertdate
Page 55 of 64
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.
Error! No text of specified style in document.Insertdate
Page 56 of 64
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!
Error! No text of specified style in document.Insertdate
Page 57 of 64
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
Error! No text of specified style in document.Insertdate
Page 58 of 64
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.
Error! No text of specified style in document.Insertdate
Page 59 of 64
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.
Error! No text of specified style in document.Insertdate
Page 60 of 64
Adverts
Royal Parks Half Marathon11th October 2020
Join us for London’s most picturesque and green Half Marathon. The course takes you
through the capitals most iconic Royal Parks, including Hyde Park and past Buckingham
Palace.
Sign up today
Head over to sense.org.uk To join #TeamSense
Error! No text of specified style in document.Insertdate
Page 61 of 64
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
Error! No text of specified style in document.Insertdate
Page 62 of 64
020 7014 9347 or email [email protected]
.
Error! No text of specified style in document.Insertdate
Page 63 of 64
Error! No text of specified style in document.Insertdate
Page 64 of 64