Annual Review 2021
Welcome
Contents What is Lifelites?
From the Chairman and Chief Executive We are delighted to present our 2021 Annual Review. The times we are living in are full of challenges for us all. The Covid-19 pandemic means we have all become more reliant on technology than ever before; from using our phones or laptops for video calls to simply using technology to keep us entertained. For the children using hospice services, our special technology has never been more important. Even when they are isolated at home, it enables them to play, be creative, control something for themselves and communicate with family, friends and hospice staff. We say a huge thank you to all our supporters for enabling us to continue, despite the pandemic, to donate packages of our magical technology for children using hospice services. We hope reading about the impact our donors have had on the lives of lifelimited and disabled children will inspire you to join them to help give kids with limited lives unlimited possibilities.
Navigating the pandemic The impact of Covid-19 The magic in action Belle’s story Introducing the Tilt Table Luca’s story Putting Lifelites on the map Ways to donate Sustainable Support Our donations and expenditure Donation form What our supporters say
@LifelitesOrg
Simone Enefer-Doy Chief Executive 2
Mike Woodcock Chairman
3 3 4 6 8 10 12 14 16 17 18 19 20
@Lifelitesorg
@Lifelites @Lifelites Tel: 0207 440 4200 Email: info@lifelites.org www.lifelites.org
What is Lifelites? Lifelites is the only charity working with every children’s hospice service across the British Isles to enrich the lives of children and young people with life-limiting conditions and disabilities by donating the latest assistive and inclusive technology. By harnessing the power of technology, Lifelites helps these children to escape isolation, giving them the means to keep in contact with their friends and schools. It gives them the chance to play and express themselves, to bring the outside world in and to live life as fully as possible. We donate all of our equipment, along with training for the hospice staff, technical support and equipment maintenance completely free of charge. We can only do this thanks to the ongoing support of people like you.
Instead of celebrations at children’s hospices, we sent out thank you videos to our supporters to show them the difference their donations have made.
Navigating the pandemic Thanks to our supporters – and against the odds – we have:
Delivered all our planned new packages of technology to children’s hospices all over the country (socially distanced of course!) Taken our hospice staff training on line.
Transformed our popular annual conference to a virtual environment with a video showcase of our latest technology. Introduced a regular monthly video e-news to keep our supporters informed of our activities. 3
The impact of Covid-19
The whole world is facing new challenges due to the pandemic. Lifelites is no exception to this. We have had to adapt our work to the new circumstances, while still donating our magical packages of technology for children using children’s hospice services across the British Isles. 4
Some fundamental aspects of work had to be altered. Under normal circumstances, the Lifelites team would carry out the installation of new packages of technology at the children’s hospices in person; we would provide hospice staff training on how to use it; and we would then hold a celebration to mark the occasion with the children,
“The online training and ongoing support is invaluable. The generous donation is wonderful but staff would not have the confidence to use it without all the support that is provided.” Demelza children’s hospice, Kent staff and our supporters who made it all possible. With the restrictions that have been in place, this was no longer possible. Despite this, we worked with our hospice partners and we were able to deliver the new packages
as planned. We entered the virtual world, and our online training has been so successful, we will continue to offer this as an alternative to travelling to the hospices, whenever practical. We have also moved our celebrations online, creating bespoke videos to show off what we have been able to deliver for each hospice installation. As well as all this, our annual conference also evolved into a virtual showcase in order that children’s hospice staff could still find out more about the technology available from Lifelites and how it can help the children they care for.
Covid-19 has had a massive impact on the life-limited and disabled children we support in partnership with children’s hospices. Life was already extremely difficult for these children, but the pandemic has increased their isolation and created more anxiety for them and their families. Many children have been unable to make their usual visits to hospices and their access to family support networks is also restricted. Children’s hospice services had to adapt. Many expanded or created their hospice at home service so they could continue to help the children through these trying times.
“Having a library of interactive technology in easy to store and accessible carry cases provides a fantastic resource for our staff to take out to families. It is certainly a wow factor for the service.” Little Bridge House children’s hospice, Devon
One way that Lifelites is assisting these adapted children’s hospice services is through our Tech Trunk which became invaluable over the last year. The Tech Trunk is a package of Lifelites portable technologies that can be easily transported when hospice staff visit children in their own homes. By providing technology that can be taken out to the children, Lifelites made sure that children are
still able to access the magical technology that we provide in order to play, have fun and be creative. Making the Tech Trunk bespoke for each hospice service is vital; it means they are getting what their children need most. We have been so pleased to be able to offer this package to help improve the lives of these children, especially during this particularly difficult time.
5
The magic in action – what the children’s hospice staff say Children’s hospice staff are vital in ensuring that Lifelites-donated technology is used to its full potential for the children who need it most. Here’s what some of them have to say about Lifelites magical technology:
6
Charlton Farm, Somerset:
Claire House, Wirral:
“Many parents and carers find it difficult to think of an activity to do with their children, especially during end of life situations. So having the Lifelites Interactive Entertainment Hub gives the families an opportunity to all watch films, play games and listen to music, making precious memories together.”
“In our opinion, the games consoles, iPads and adapted controllers can be a lifeline for some of our young adults. It gets them to socialise and be stimulated but also transports them into a world where anything is possible. Their limited mobility doesn’t matter when they can transform into super heroes fighting crime. It just breaks down the barriers of what an individual can or can’t do and lets them just have fun and enjoy being a young adolescent again.”
Little Havens, Essex: Zoë’s Place, Coventry: “Currently, the most used piece of equipment at the hospice from Lifelites is the iPads. They allow them to choose their own games, videos or apps and make it possible for them to interact with the care team and other children effectively.”
“The Eyegaze has shown us how a child with what we thought was very limited understanding, appears to make an independent choice. Another child trying the Eyegaze showed such pleasure in making something happen on the screen for themselves without someone else having to assist them.”
ellenor, Kent: “There is always a lot of laughter when the children are using the Mobile Magic Carpet. It is also amazing for sensory exploring and for our less able children to lay and watch the colours changing, and for the image to react to any small movement.”
St Oswald’s, Newcastle: “Most of our children have very little autonomy because of their extensive physical, sensory and learning disabilities so they love being able to ‘take control’ of the Magic Carpet. Their actions have an immediate and very obvious effect, which is both hugely fun and enormously satisfying!”
7
Belle’s story Belle is just four years old and has a diagnosis of Cerebral Palsy. She is still undergoing many tests to provide a full diagnosis, as well as to gain a better understanding of the impact this will have on her life. As if that wasn’t enough, she has epileptic seizures requiring medication that she has been on for over a year.
Due to her condition, Belle cannot walk or talk. Her vision is also impacted; her parents were told that she could see around 50cm in front of her before things begin to get blurry, so she wears glasses to help with this. Belle visits Zoë’s Place Baby Hospice in Coventry. The limitations of her condition, mean she cannot use technology such as tablets or computers, and still struggles with many toys. The Beatbo – a fun interactive toy – has become her favourite! She loves to watch it dance and talk to it, and has no trouble using the special mouse to turn it on and operate it. Switches (special mice) enable users – including those with severe and profound disabilities – to use technology to communicate, have fun, learn and take control. They are easy to use with a range of technologies from computers to toys; there is even one that helps them use iPads. Belle enjoys using the Lifelites’-donated iPads for fun and games. She love the sensory ‘cause and effect’ games on the iPads and is happy to sit and play on them for hours.
8
Zoë’s Place baby hospice, Coventry said: “The Eyegaze is amazing, the children and families love it. Our children with limited movement get so much from it. Many of our children have mobility issues and developmental delay but this equipment allows them to communicate more effectively and can be used by them all.” With the Eyegaze, she has begun to make choices and communicate. In a life where most things are done for her, by enabling Belle to use a computer, just with the movement of her eyes, this technology gives her the opportunity to control something for herself and live her best life possible.
9
Introducing the Tilt Table Many of the children who use Lifelites donated assistive technology spend a lot of time in bed or restricted to their wheelchairs. Packed with a huge variety of entertaining apps, the Tilt Table enables every child to take part in fun activities, or help with their education through accessible learning games. The table can, as the name implies, tilt and move up and down. So no matter whether a child is on the floor, in a wheelchair or in bed, the Tilt Table enables lifelimited and disabled children to play with their brothers and sisters, make new friends, paint, and control something for themselves.
10
So many life-limited and disabled children are frustrated by being unable to hold a pen or paint a picture. With the Tilt Table, children can express themselves through creative activities or perhaps explore the world, find their favourite stories, animals or superheroes. The large screen of the Tilt Table gives every child the opportunity to control something and express themselves.
Bluebell Wood children’s hospice, South Yorkshire “The Tilt Table has been used by many children, all with different needs. It has provided great distraction and is very popular, especially with our children with autism.”
Claire House children’s hospice, Wirral “The Tilt Table is amazing! It can be used with our children, siblings and families. This gives families an opportunity to do fun things together which sometimes isn’t possible without it. The way the table tilts is brilliant as a lot of children can only see at certain angles.”
Demelza children’s hospice, Kent “The Tilt Table has been a particular area of interest for the children and has enabled them to interact with the games and stories. We have also used the zoom element of the table for the children to gather around and access the online sessions such as nursery time and music programs. Due to the size of the table it means this feels like a more sociable event.”
11
Luca’s story
Luca is six years old and when he was just a couple of months old he was diagnosed with CHARGE, a very complex genetic syndrome characterised by swallowing and breathing problems, hearing and vision loss, and delays in development. Despite this, he is a very happy and smiley young boy. Luca and his family have been using Acorns children’s hospice in Birmingham for over four years now and get to use the Lifelites technology whenever they visit.
12
Although Luca is deafblind, he has limited vision and hearing and wears an aid which helps him to listen to music, one of his favourite activities. Which is why the Lifelites’ donated iPad has become his favourite piece of technology. He loves using anything with music and sounds and the colourful apps which help to stimulate his vision.
“We enjoy playing with the equipment together and Luca especially likes his brother playing along. He loves to watch and uses his limited vision very well, getting so excited when you all join in with him.” Luca’s Mum.
Acorns Birmingham children’s hospice said: “The Lifelites iPads provide an excellent resource for children with all sorts of needs due to their easy interface and numerous apps. These have clearly been the most popular and effective devices with the children who use our services.”
Luca also really enjoys using the Mobile Magic Carpet, which projects moving images onto the floor (or wheelchair tray or bed) that the children can actually play with. Through the images, music and sounds, it gives them the chance to escape the confines of their conditions and immerse themselves in a world of make-believe: The bright colours and movement help to stimulate Luca’s limited vision and he loves playing with the pictures of fish that swim up to and around him.
13
Wherever you are, there’s a Lifelites project near you We work with every children’s hospice service across the British Isles – and help 10,000 life-limited and disabled children each year. So wherever you are, there is a Lifelites project near you. Each of our hospice packages are worth around £50,000 over their four year lifespan. This includes the cost of the equipment, installation, staff training, technical support and equipment maintenance. Every four years, we aim to return to each hospice with a brand new package of the latest technology. Although many hospices had to change the way they worked, we were still able to donate brand new packages of magical technology for children using hospices services across the British Isles. Here you can see where we hope to be able to donate to over the next four years.
If you’ d like to donate and support any of these projects, please get in touch with us by: Emailing info@lifelites.org Or calling 020 440 4200. 14
Our planned new packages
2021
2022
2023
2024
Acorns Birmingham
Andy’s, Lincolnshire
Acorns for the Black Country
Alexander Devine, Berkshire
Acorns for the Three Counties, Worcestershire
Bluebell Wood, West Yorkshire
Brian House, Lancashire
Charlton Farm, Somerset
Christopher’s (CHASE), Surrey
Chestnut Tree House, West Sussex
Francis House, Manchester
Butterwick Children’s Hospice, Durham
Helen House, Oxfordshire
The Children’s Trust, Surrey
Horizon House, County Antrim
Claire House Liverpool, Lancashire
EACH Ipswich, Suffolk
Isle of White Hospice at Home
Derian House, Lancashire
ellenor, Kent
Demelza Sittingbourne, Kent
Julia’s House, Wiltshire
EACH Milton, Cambridgeshire
Forget Me Not, West Yorkshire
Demelza SEL, London
LauraLynn, Dublin
Hope House, Shropshire
Haven House, Essex
Little Bridge House, Devonshire
Jigsaw, Cumbria
Julia’s House, Dorset
Keech Hospice Care, Bedfordshire
Little Harbour, Cornwall
Naomi House and Jacksplace, Hampshire Rebecca House, Isle of Man Rennie Grove Hospice at Home, Hertfordshire Tŷ Hafan, Cardiff
Noah’s Ark, London Rachel House, Kinross Rainbows Children’s Hospice, Leicestershire
EACH The Nook, Norfolk
Little Haven’s with The J’s, Essex Oakwell House and Jersey Hospice Care, Jersey Richard House, London
Robin House, West Dunbartonshire
The Donna Louise, Staffordshire
Shooting Star, Middlesex
Tŷ Gobaith, Conwy
Claire House, Wirral
Jessie May Trust, Somerset Martin House, West Yorkshire St Oswald’s Children’s Service, Newcastle Zoë’s Place Coventry, West Midlands Zoë’s Place Liverpool, Lancashire Zoë’s Place Middlesbrough, North Yorkshire
15
Ways to donate Lifelites Honours Aim high to join the ranks of Lifelites honoured donors. In kind supporter: Pro bono gifts or services Benefactor: regular monthly donation £500: Donor £1,000: Supporter £5,000: Sponsor £10,000: Principal Sponsor £20,000: Major Partner Platinum partner: Adopt your favourite Lifelites project
16
Children’s hospice services do not pay anything towards their Lifelites package. Lifelites’ work is funded by donations. Over its four year life-cycle, each package – including the equipment, hospice staff training and technical support – costs Lifelites approximately £50,000.
Ways to donate
The number of life-limited and disabled children cared for by children’s hospice services is increasing and our work is needed now more than ever, which is why we need your support. However you wish to give, we have made it easier than ever to donate to us.
Via bank transfer
Remember – However you choose to donate, please help Lifelites to claim a further 25% on top of your donation by ticking the Gift Aid box.
You can donate or find other ways of supporting our work via our website www.lifelites.org
Bank: NatWest Account Name: Lifelites Account No. 26601672 Sort code: 60-30-06
Leave a legacy Please contact us to find out more about our free will writing service or to speak to us about leaving a gift in your will. 0207 4404200
By post Fill in the form on page 19 and return it to us with your cheque made payable to ‘Lifelites’.
Sustainable support Lifelites Benefactor Would you become a Lifelites Benefactor by making a regular monthly gift to Lifelites? By signing up to become a Lifelites Benefactor and committing to a regular donation to Lifelites, you will be helping ensure we can continue to give life-limited and disabled children all over the British Isles the chance to play, be creative, communicate and control something for themselves.
How to become a Lifelites Benefactor ✦ Either visit Lifelites.org/donate ✦ Or scan the below QR code with your smartphone camera
Lifelites Platinum Partner Why not adopt your favourite Lifelites project? Depending on the size, it costs Lifelites around £50,000 to donate all our equipment and services for the children using just one hospice service over four years. By adopting the Lifelites project at your favoured children’s hospice service and becoming a Platinum Partner, you will be ensuring the sustainability of our work for the children there.
Ways to become a Lifelites Platinum Partner ✦ Agree to commit the funding for your favourite Lifelites project for at least four years ✦ Or call the Lifelites office on 0207 440 4200.
✦ Partner with another organisation to fund your chosen Lifelites project for at least four years.
Help us to claim back 25% tax on your monthly gift by ticking the gift aid box. 17
Our donations and expenditure Lifelites does not benefit from any government grants or contributions. The work we do is only made possible thanks to donations from organisations and individuals like you.
Donations
Charitable Trusts 54% Community Groups 32% Corporate 7% Individuals 4% Gifts in Kind 2% Sponsored events 1%
Expenditure
Charitable activities 74% Fundraising, Governance & investments 26%
The Masonic Charitable Foundation continues their generous donation of office premises and administrative services to Lifelites. This means our overheads are kept to a minimum so we can focus the funds we raise on providing and maintaining our life-enhancing technology.
Our patrons Lifelites patrons help us to promote Lifelites’ vital work, as well as often taking part in our fundraising and PR activities. Thank you to you all for all that you do: Peter Bowles, The Rt Hon the Earl Cadogan KBE CH DL, Anita Dobson, Jasmine Elcock, Sarah Ezekiel, The Baroness Finlay of Llandaff, The Rt Hon Lord Young of Graffham DL, Lady Pamela Kalms MBE, The Baroness Finlay of Llandaff, Joe Pasquale, Robert Powell, Esther Rantzen DBE, Dr Siobhan Thomas, Rick Wakeman CBE, Sir David Wootton, Lord Grade of Yarmouth.
18
Please support Lifelites with a donation £ .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Our contact with you will include the latest stories from the children you are helping to support, as well as activities and opportunities you may be interested in. Please indicate below if you prefer NOT to receive these postal updates.
Please do not send cash
n Please do not send me updates from Lifelites via post
Please complete all relevant sections and return your completed form with your donation to: Lifelites, 26 Great Queen Street, London WC2B 5BL
We would like to occasionally get in touch with you electronically. Please indicate your preference below.
I enclose a cheque for
My personal details First name. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Surname. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Address. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Phone n Yes n No Email n Yes n No Text message n Yes n No
Boost your donation by 25p for every £1 with Gift Aid n I want to Gift Aid my donations to Lifelites (Charity no. 1165791), including donations that I make in the future and have made in the past four years.
. . . . . . . . . . . . . . . . . . . . . . . . . . . Postcode. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax in the current tax year than the amount of Gift Aid claimed on all my donations it is my responsibility to pay any difference. I will notify Lifelites if I wish to cancel this declaration, change my name or home address, or no longer pay sufficient tax on my income and/or capital gains.
Phone number . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Signature. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Email. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Date . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
..................................................................................
As a supporter of our work to give kids with limited life unlimited possibilities, we will keep in touch and send you occasional updates by post.
©Lifelites 2021. No part of this publication should be reproduced without prior permission from Lifelites. All information correct at time of printing.
19
What our supporters say David Swain, Metropolitan Grand Secretary, Metropolitan Grand Lodge “It is heartening to see Lifelites continuing their sterling efforts to support life-limited and disabled children using hospice services across the British Isles, despite the challenges created by the current pandemic. I have seen at first-hand the unbelievable work they undertake and the unmitigated joy they bring to the lives of these children and their families. I have been proud to see London Freemasons growing their support for this fantastic charity.”
Dr David Staples, CEO/Grand Secretary, United Grand Lodge of England “Every single day, in children’s hospices across Britain, Lifelites is enhancing the lives of life-limited and disabled children and young people. Despite the challenges of the last year, Lifelites has continued to donate assistive technology to give these children a chance to play and communicate in spite of their conditions. It was incredible to see how they adapted so quickly and made sure that children would still have access to their fantastic technology. I know that many of my brethren across the country join me in proudly supporting Lifelites in all their incredible work.”
@LifelitesOrg @Lifelitesorg @Lifelites Tel: 0207 440 4200 Email: info@lifelites.org www.lifelites.org | Charity no. 1165791
Karanjeet Kaur Assan, District Governor, Lions Club of London “I am sure that my Lions Club colleagues would join me in expressing our excitement at the prospect of supporting Lifelites next year. We know that the children’s hospices, the children they care for, and their families have gone through a turbulent period and the technology donated by Lifelites gives these children the crucial opportunity to play, to be creative and to communicate. Vital work.”
@Lifelites