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Making a lifetime of difference Together for Short Lives' value and impact 2018-2019

When a child's life is expected to be short, there's no time to waste.

Together for Short Lives is here to make sure the 49,000 seriously ill children and their families across the UK can make the most of every moment they have together, whether that's for years, months or only hours. We stand alongside families, supporting them to make sure they get the vital care and help that they need.

Getting the right support can make a lifetime of difference. That's what we're here for.

This year, we've grown our helpline and family support hub. We've secured lasting policy change that will directly improve the lives of children. And we've redoubled our efforts to raise vital funds and to campaign for lifeline funding for children's hospices. None of this would be possible without the help of our corporate partners, supporters, funders and friends. A huge, huge thank you to each and every one of you.

Andy Fletcher CEO Together for Short Lives

The difference a year makes

Our helpline is a lifeline for families. This year we helped more families than ever. We saw a 59% increase in calls and provided 16,799 minutes of support.
75 families were helped to access specialist legal support and advice to help them get them get the care and support they need
We had 541 one-to-one conversations with politicians and civil servants - an increase of 72% on last year.
Nearly 9.000 professionals and families downloaded our specialist publications - 2,100 people accessed our new Guide to Children's Palliative Care
Children's Hospice Week helped change perceptions and reached over 37 million people

The Lifeline

Thousands of families live with the knowledge that their child will die young. Our Family Support Hub gives families helpline support, connects them with other families like theirs, and helps them when things go wrong, giving specialist legal advice.

Together for Short Lives has been a lifeline for my family. You're an amazing charity and I really appreciate all that you offer

Mum, who contacted our helpline last year

This year we've helped more families than ever. Thanks to funding from the Department for Digital, Culture, Media and Sport and the National Lottery Community Fund, we have expanded our Family Support Hub so we can reach more families – getting the right support can make a lifetime of difference.

Making life a little easier

Families often struggle to communicate their child's care history, needs and wishes with the huge number of professionals involved in their care. So this year we launched our My Care Transfer resource – a digital tool that stores information about a child's unique needs and care. The information can be accessed through phones and tablets and provides an easy way for families to share care plans with medical professionals. The tool was developed with funding from the Bupa UK Foundation.

My Care Transfer Plan is an important tool in our lives and has been used for acute admission very successfully. What's also invaluable is that nothing is lost in the emergency handover in hospital.

Margaret Jones, mother of Iwan

Iwan's mother Margaret finds the My Care Transfer tool invaluable for her son Iwan's care

A winning case

Megan and her younger brother Harry both have rare and complex conditions, and until recently didn't have a clear diagnosis. Although Megan had great care when she was young, things changed when she turned 18. The local NHS commissioners said that Megan's healthcare didn't meet their funding criteria. Megan's family was devastated and determined to fight. They contacted our helpline and we offered them specialist legal support, guiding them through two long and complex appeal hearings. With our help, and a breakthrough on Megan's diagnosis, the family won, and Megan's funding continues.

[our legal advice specialist] has been amazing and provided a reassuring arm for us to lean on when we needed it.

Ian, father of Megan and Harry

Ian and Megan, who with the support of our legal advice service won their appeal to continue funding for Megan's care.

Fighting for Families

We want children and families to get the best care and support possible, and we work hard to push politicians and policy makers to invest in high quality children's palliative care.

I love the fact that Together for Short Lives is a voice for families whose children will have short lives. That's a big thing for me, because it's very difficult for individuals to have that voice.

Mike Turner, father of Iona

Mike Turner, whose daughter Iona has a life-limiting condition

Exposing patchy care

We worked with a cross-party group of Westminster politicians, the All-Party Parliamentary Group for Children Who Need Palliative Care, to investigate whether the government is meeting its end of life care commitment. Families, young people, doctors and experts provided evidence to the investigation, which found that the quality of palliative care children and families can access is patchy and depends on where they live in England.

Young people Junior and Lucy have life-limiting conditions, and attended the All-Party Parliamentary group reception at the House of Commons
By sharing my experience of life with Lennon I can hopefully educate the people making decisions and improve the lives of other families facing the death of their child

Nikki Lancaster, mother of Lennon

Nikki's son Lennon died at the age of 10 as a result of an undiagnosed life-limiting condition. Nikki gave evidence to MPs in the All-Party Parliamentary Group which drew attention to the need for improved respite and out of hours care.

Sustainable care

We teamed up with our members to secure additional funding for children's palliative care in the NHS Long Term Plan. As a result NHS England has announced that up to £14 million extra a year will be available for children's palliative care services by 2023/24

Flexibility for bereaved parents

There is no timeline on grief. That's why we successfully campaigned this year as part of the National Bereavement Alliance to extend the window in which parents can take their two-week statutory bereavement leave. Parents and kinship carers can now take their leave any time over a period of 56 weeks, rather than exclusively in the 56 days following the death of their child.

Speaking out

This year we've run campaigns and worked alongside our colleagues in the sector to amplify the voices of the families we work with.

In May Children's Hospice Week, our national awareness week which shines a spotlight on the services that support the amazing children and families that we are here for, reached 37 million people.

HRH The Duchess of Cambridge, as Royal Patron of EACH, was just one of the many people who actively supported Children's Hospice Week

Children's Hospice grant campaign

During the Summer we worked with mum Kirsty Murray from Birmingham to present a 6,670 strong petition to 10 Downing Street, calling for an increase in the Children's Hospice Grant. Kirsty's daughter Ella had a rare genetic disorder, and received fantastic care and support from children's hospice Acorns in the Midlands.

All children's hospices do a fantastic job. That's why the work Together for Short Lives does is so important

Kirsty Murray, mum of Ella

Mum Kirsty Murray delivers our petition calling on the government to increase the Children's Hospice Grant to £25,000 to the Prime Minister

Baby Loss Awareness Week

As part of Baby Loss Awareness Week we told Danny and Sam's story about the care they received from Keech Hospice Care when they discovered their daughter Lexi would live a short life.

We had 19 days with our little girl. The six days we were at Keech were truly special. Our only regret is that we didn't go there sooner.

Danny, mother of Lexi

Danny with her daughter Lexi

Supporting lifeline services and professionals

Thousands of professionals play a vital role in caring for the UK's 49,000 seriously-ill children – and we're here to support them.

We took nearly 350 helpline calls from professionals needing information and resources for the children they care for. Our digital care forum connects children's palliative care professionals across the globe.

Our sharing and learning events and webinars for professionals have been attended by 577 people. And we shared new resources to help professionals deliver specialist care: 2,100 professionals accessed our the updated edition of our essential Guide to Children's Palliative Care, which we published last year.

The new edition of the Guide to Children's Palliative Care is so useful. It's particularly helpful when introducing children's palliative care to our new trainee doctors.

Dr Antonia Wolfe, Nottingham University Hospitals NHS Trust

Thousands of professionals have downloaded our resources and attended our events this year

Living life to the full

The number of young people with life-limiting conditions is growing, so one of our priorities is to improve the transition from children to adult services. This year we funded eight innovative projects through our Improving Transitions Young People Fund that have the power to help young people like Chloe focus on what's important to them. Chloe is part of a project we funded that's led by and for young people with The Open University Sexuality Alliance and Hospice UK. It's designed to help disabled young people to talk about and explore their sexuality – an aspect of their lives that is often overlooked or dismissed.

I live with a number of conditions contributing to a life-limiting condition and disabilities. I strongly believe that disabled young people could be supported in a much better way with regards to sexuality and relationships, and this project is absolutely a constructive answer to this.

Chloe

Chloe

Making a lasting difference

Every year we work with our corporate partners to raise money for children's hospices across the UK.

This year our National Fundraising Scheme raised £475,063 for children's hospice services across the country who support thousands of children and families between them.

There are 54 children's hospice services across the UK, and all of them rely on charitable support and fundraising to continue to function. We work with national corporate partners such as Disney and Hobbycraft to raise money for these lifeline services, which is then distributed to help them continue to care for children and families.

Time to recharge

This year our partnership with Center Parcs raised more than ever before, and one of the most direct ways they supported families was by offering short breaks to families with a seriously-ill child.

For Emma-Jayne and her daughters Shalome and Faith the short break at Center Parcs "thrilled our souls". Shalome has a life-limiting condition and finds it hard to travel, but as Emma-Jayne explains they were treated like "royalty" during their break:

You have given us the confidence boost we needed. We bonded like never before as the whole experience was inclusive, accessible and welcoming. We feel blessed beyond words
Shalome and Faith enjoying their short break at Center Parcs

Pedal Power

Gaynor, who works for our corporate partner Simpson Travel, went from cycling novice to legend when she took on an epic 417 km ride from Vietnam to Cambodia in order to support our work. She'd never ridden for longer than 30 minutes when she signed up for the challenge, but that didn't stop her training and completing the ride to raise a jaw-dropping £5,000.

I chose to raise money for Together for Short Lives because, as a mum of two boys, my worst nightmare would be for something to happen to them.

Gaynor, Together for Short Lives supporter

Gaynor during her ride from Vietnam to Cambodia

Your support is changing lives

When a child's life is expected to be short, there's no time to waste. Together for Short Lives is here to make sure that seriously-ill children and their families can make the most of every moment they have together, whether that's for years, months or only hours. We can only do this with your support.

But there is still so much more to do.

Our urgent to-do list for 2020 is to: launch a bereavement fund to help financial hardship following the death of a child; research families' experience of good children's palliative care; reach more families via our Family Support Hub; develop a tool to share the latest research on the numbers of affected children within regions of the UK; creating a specialist digital forum for care professionals; publishing a new Safe Use of Medicines toolkit; sharing new data revealing the true picture of need nationally; and increasing lifeline funding for children's hospices

Thank you to everyone who has supported and funded Together for Short Lives' vital work this year.

Your generosity, passion and enthusiasm mean the world to seriously-ill children and their families, and to all the children's hospices, palliative care professionals and charities across the UK. With your help we can guide families through the toughest of times and help change their lives for the better. You can continue to support this work by making a donation today.

Thank you so much for all our support. You listened and made me feel like I could cope with my daughter's diagnosis of cancer. It was nice that you didn't say it was all going to be okay when we know it won't be. Your information about our choices on where she dies was an eye opener. You do amazing work for families and I can't begin to say how much of a difference you have made to our family.

Parent, supported by our helpline