Contents

Care Services

Campaigns

Research

Working Together

Building Together

 

Foreword

Working together to change lives

Newlife is there to help families, often when their need is greatest. We work together every day to make sense of the system, which is like the broken pieces of a jigsaw, trying to fit them back together – influencing policy, providing equipment and, quite literally, changing lives.

The board of trustees supports the tremendous work of Newlife staff and volunteers to help improve healthcare and highlight issues to decision makers. Together let’s give hope to every child challenged by disability and give every terminally ill child real quality in the life they have.

Care Services

Changing children’s lives

Every day in the UK ordinary children in ordinary families become disabled or are diagnosed as terminally ill. Every day Newlife is there to support them and their families. If it was your child you would want the very best for them. Newlife is the UK’s largest charity provider of specialist equipment for disabled and terminally ill children.

Our helpline is staffed by a dedicated team of nurses who support and care for families. Our Grants Service provides equipment that reduces pain, allows children to walk, talk, go to school and play with family and friends.
Newlife’s unique Emergency Equipment Loan Service ensures children who are terminally ill, life limited or are in danger through lack of appropriate support, get the right piece of equipment at the right time, often within 48 hours of an application being made.
Play Therapy Pods offer loans of special toys to aid development and interaction. Comfort Capsules help families of terminally ill children make precious memories.

Equipment Grants of more than
£16m
have helped
10,920
children

Emergency Equipment Loans have helped
917
children since March 2011

We have made
2,717
Play Therapy Pod loans since March 2011

Comfort Capsules have helped
82
families make memories since March 2015

The nurses are angels – always happy to take a call and chat through any problems we have.

Mum, Ruth Rankin

Do you want to know more about what we do?

EQUIPMENT GRANTS

Newlife Grants help provide hundreds of pieces of vital equipment every year to children all around the UK. Wheelchairs and walkers aid mobility, specialist beds and car seats keep children safe while communication aids give them a voice. The range of equipment is vast and Newlife ensures that the right piece of equipment is provided at the right time, fast tracking grant applications when a child’s need is urgent – for example when a child can’t leave hospital without a specialist buggy.

EMERGENCY EQUIPMENT LOANS

Emergency Equipment Loans offer a quick response service for families of life-limited and terminally ill children and those whose safety is at immediate risk because of the lack of appropriate equipment. Newlife aims to get wheelchairs, buggies, beds, seating and portable hoists delivered and installed in families’ homes within 72 hours of a child’s relevant health professional contacting the charity.

PLAY THERAPY PODS

Toys have an important role in the development of every child. Yet specialist therapeutic toys for children with complex needs are often hard to find and definitely more expensive. As well as benefitting development, there is a vital emotional aspect to playing – barriers are broken and relationships strengthened. Newlife has almost 400 specialist toy pods for children of different ages and needs and has made around 2,600 loans.

COMFORT CAPSULES

Watching your baby grow is a remarkable experience – but when the future is uncertain it becomes all the more precious. To support families facing the unthinkable, Newlife offers Comfort Capsules to help make memories they can treasure forever. Put together with the help of an expert team, each capsule contains carefully chosen items such as a cuddly toy, hand print maker, camera and digital photo frame.

If you would like to know more about how Newlife supports children in your county, please visit www.newlifecharity.co.uk/local/ and select your county from the list.

 

Campaigning

To give families a voice

Families of disabled and terminally ill children often feel abandoned and alone, which is why Newlife campaigns for change – both nationally and locally – to give them a voice.

At national level we’ve lobbied government, resulting in a law change that could benefit up to 70,000 wheelchair using children. We also work with local authorities to plug families back into statutory provision. This service has resulted in £1.8million of additional equipment being funded by local authorities, ensuring that families’ needs are taken into account when budgeting for the year ahead. In some areas we have worked with local services to change provision policies.

Working with MPs and breaking down barriers to equipment provision to change lives

There are now almost
1 million
disabled children in the UK

Newlife has leveraged more than
£1.8m
of equipment from local authorities for
1,299
children

650
MPs have worked with Newlife

Newlife has made
2,867
Freedom of Information requests to understand equipment spend on disabled children across the UK

Newlife has been involved in
530
government consultations

34,000
signed our petition calling on government to prioritise equipment provision for disabled children

Thanks to Newlife, a recent change in the law could help up to
70,000
wheelchair-using children

Up to
£90m
of specialist equipment is sitting, unused, in statutory service warehouses around the UK. Newlife has recycled over
£1m
of equipment which would have been thrown away

Breaking Down Barriers

We held a week-long exhibition at the House of Commons highlighting the barriers preventing some of the UK’s one million disabled children getting the equipment they urgently need. Newlife continues to work with Ministers, MPs, MEPs and members of the House of Lords in a bid to find solutions to the issues that disabled children and their families encounter every day.

 

Research

Gives real hope to families

Newlife’s investment in pioneering medical research provides real hope for the future. We have invested more than £16million in over 300 individual projects at more than 80 research institutions across the UK. Over 50 disease causing genes have now been identified and Newlife is funding projects into new treatment. Newlife’s ten-year medical training programme helped over 60 students get an insight into the world of research. The Newlife Birth Defects Research Centre was opened at the Institute of Child Health in London by HRH The Princess Royal in 2012. It is Europe’s biggest centre dedicated to research into birth defects, the number one threat to child health in the world today.

Finally, Newlife brought the brightest minds together at an international symposium to look at the potential to reverse the effects of intellectual disability. A subsequent £1m investment is looking to realise this lofty goal. Newlife remains committed to helping the children of the future today as we believe medical research holds the key that unlocks the door to reducing disability and improving child health.

Let’s get started

Our innovative start-up grants provide funding of up to £15k to give researchers the opportunity to test out theories before applying for future grants.

A combined £90,000 of investment from Newlife’s start-up grant award enabled six researchers to gather enough results to secure £725,000 of additional funding to take their work on to the next level.

Start-up grants give researchers a new understanding of conditions researched and have helped to develop their careers.

This was my first independent funding and allowed me to pursue a new avenue of research. I developed collaborations with researchers at different institutes. This led to several outcomes including a first author publication and presentation at several international conferences.  I also won the Bronze award at the SET for Britain, which is a competition where scientists present their research at the House of Commons

Beth Holder
Research associate at Imperial College London

There are not many existing schemes in the UK that fund preliminary studies in the area of rare disabling diseases of children. I think that the Newlife start-up grants are absolutely vital in supporting new ideas that need to be tested.

Siddharth Banka
Senior clinical lecturer at the University of Manchester

Newlife have spent close to
£16m
on pioneering research projects across the UK

Newlife has funded
305
research projects at
83
different institutions around the UK

Newlife has supported
64
students, giving the next generation experience in genetics

Map of research funded by Newlife around the UK

 
 

Working Together

To change lives

Very much like a jigsaw puzzle, it is only when everything comes together that you can see the final result. At Newlife there are many dedicated people who work together to change the lives of disabled and terminally ill children.

Newlife has worked with organisations such as Central England Co-operative, Morgan Foundation and River Island, raising vital funds that help change young lives.

Newlife guarantees 100 per cent of all monies donated or raised is spent on the service or in the county of the donor’s choice.

Jumping out of planes, holding bake sales, running through mud or across the Sahara desert, getting crafty or dressing up as a superhero … our supporters have found innovative ways to raise money for us.

£8 million
raised through fundraising alone

Newlife guarantees to any donor that
100%
of all funds raised or donated will be restricted to the county or service of their choice

£40 million
passed to Newlife charity from Newlife’s trading company to support its aims and services

Newlife has
500
hours of volunteer activity every single week

Building together for the Future

In shaping future plans for Newlife we must think about what really matters and what will truly
change the lives of children with disabilities and their families.

So we must ask one very simple question; if it was your child, what would you want for them?
Every parent will answer the same – ‘The best’.

The Newlife vision is to give children with disabilities the very best chance in life, through equipment and medical research and by campaigning so their needs are known and understood.

Vision, Mission, Values

WHY?

Because if it were a child you love – you would want the best for them

VISION

That EVERY disabled or terminally ill child and their family get:
The equipment they depend on
The quality of life they deserve
The caring support they need and the chance to benefit from pioneering medical research

MISSION

Together, we will make life better for disabled or terminally ill children and their families

OUR VALUES

Always compassionate and deserving of trust – in all we do
Making things happen – for those we serve
Leading in our field – to make things better
People at our heart – every day

Some of Newlife’s staff who have worked for us for ten years or more.

Thank you so much

Dylan Miles from Hampshire sadly passed away in 2014, aged 17. Dylan was given a specialist bed and wheelchair through Newlife’s Emergency Equipment Loan service and a special seat through the Equipment Grant service.

Mum Dominique Morrison said: “There are not enough words to explain how grateful we are to Newlife – for taking away the stress of trying to provide the equipment our son needed and enabling us to make the most of the last 18 months of Dylan’s life happy, knowing that he was able to make the most of every experience we shared in complete comfort. It was such a relief to work with an organisation that was happy to help Dylan get what he needed when he needed it – that was priceless.”

Lewis Graham, aged 11 from Glasgow, received a SafeSpace bed.

Dad Steven said: “We applied for the SafeSpace as we were trying to improve the quality of his life. We were at desperation stage before and knew we had to do something – it scares me to think we were considering a residential school for him – but the SafeSpace worked very quickly and as things stand now we are just looking at schools for complex needs.”

Angel Riley, aged one from South Yorkshire, received the loan of a Play Therapy Pod.

Dad Andrew said: “We feel that the play pod has brought new things to Angel’s life in different ways. If it wasn’t for Newlife providing us and Angel with the Play Therapy Pod I don’t think she would be as far in her development as she is now.”

Joshua Humphreys, aged six from Cheshire, received a walker.

Mum Lisa said: “It has given him a massive new lease of life. Joshua is delighted with his new-found independence – and we have all cried over seeing him able to do so many more things thanks to the walking frame. For the first time in his life he has been able to walk to school carrying his own book bag, play bat and ball games with his friends and take a more active part in school PE lessons.”