Bringing colour to families' lives Our value and impact 2019-2020

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 the 99,000 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.

This has been an extraordinary year for all of us. For Together for Short Lives, as the UK-wide charity supporting some of our most vulnerable and seriously ill children and families, and the professionals and lifeline services they rely on, these have been our most testing times.

We have had some great successes in 2019-20.

  • We invested in growing our helpline and family support services, reaching more families than ever.
  • In 2019 we launched our Butterfly Fund, which helps to relieve some of the financial burden families face when coping with the death of a child.
  • We won our children’s hospice funding campaign, after years of tireless campaigning, which will more than double the NHS’s Children’s Hospice Grant in England to £25 million.
  • And we have won some exciting new partnerships with M&S Food and Premier Foods, raising lifeline funds to directly support children’s hospices across the UK.

But the coronavirus pandemic changed everything for everyone. With coronavirus gathering pace across Europe we sadly could not deliver all we’d hoped to. Instead, we focused our energies on helping vulnerable families to deal with the cruel cocktail of isolation and fear for what the virus meant for their child. Through the support of some generous funders we launched a Covid-19 Emergency Relief Fund, helping struggling families to make ends meet. And the wonderful company Foodbuy responded to our call for help, stepping up to give families caring for seriously ill children emergency food parcels.

Meanwhile we worked with a coalition of charities to help secure emergency funding for the sector direct from the Treasury.

And there is so much more to do. The demand for our work has never been greater. The number of children living with life-limiting illnesses is growing and many are living with greater medical complexity. Many families talk of being trapped at home, isolated and alone, providing round the clock care. Getting the right support for families is vital.

We are determined to meet this challenge and we will not rest until children and families get consistent and sustainably funded support, wherever they live and for as long as they need it.

We cannot do this without the generosity of our supporters. Your support has been wonderful and has helped us to bring a bit of colour to the lives of the families we are here for. Thank you so much, your help means the world to seriously ill children and families.

Andy Fletcher – CEO Together for Short Lives

The Lifeline

Isolation has been tough for everyone, but for families caring for a vulnerable child with a serious illness, life has been nearly impossible. To support families most in need this year we acted quickly:

  • We introduced a Covid-19 Emergency Relief Fund for families in financial hardship – we helped 500 families.
  • We launched an online Covid-19 FAQs for families and professionals.
  • We set up online ‘Virtual Cuppas’ for families feeling isolated during the pandemic to connect with one another.
  • We arranged a Zoom interview with three NHS Doctors who answered burning questions from families.
This year calls to our helpline have more than doubled, we've provided 250 hours of support for families, our Covid-19 FAQs have been viewed nearly 10,000 times and 500 families have benefitted from our Covid-19 relief fund.

A helping hand

The impact of Covid-19 meant that many families were forced to shield early, impacting heavily on their finances. When Covid-19 locked families down, we opened up a special Emergency Relief Fund – a one-off £200 cash grant that they could spend on whatever they chose.

Lottie and Ed live in East Sussex with their son, six year old Freddie, who has a rare genetic condition. The family live in a flat with a small balcony and have been shielding for many months.

Thank you so much for the funding you have given Freddie. He has been without school since early March and has ADHD alongside many other complex medical conditions. We plan to spend this on stimulating new books and toys and, perhaps even a bike if we have enough.

Coming together online

We have not left the house at all since February, other than a couple of emergency hospital admissions with our youngest daughter. .
Like most other parents, one of the ways we cope is by organising and constantly fulfilling all the different roles that we all play. Rarely a day goes by without phone calls, meetings, appointments and the endless jobs that need to be done to keep our children safe, well and happy.
Lockdown brought a sudden halt to this and it left me feeling like I’d been hit by a train. The Virtual Cuppa events have given me the opportunity to chat to others and discover that I wasn’t the only one to feel like this.
The sessions and your Family Support Facebook group offer opportunities for us to remember that we aren’t alone.

Kristi, Mum to Adrian, Abigail, Donna and Chloe (pictured)

The Virtual Cuppas have been invaluable especially while shielding. The weekly sessions have given me something to look forward to. I have been able share my fears with people who understand, and also share the precious moments too. It made me feel less isolated.

Mum Donna and daughter Mary

Fighting for Families

2019 saw us step up our campaign to more than double NHS England funding for children’s hospices – and we won.

News that some children’s hospices were struggling to keep their services open strengthened our resolve, and In July 2019, ministers responded and promised a huge increase in the NHS Children’s Hospice Grant from £12 million to £25 million by 2023. Taking the pressure off children’s hospices helps them to focus on what really matters, providing vital care to children and families who would have been lost without their hospice’s support

Last year we also fought to take financial pressure off grieving parents. In 2019, we were part of a winning campaign to secure paid time off for parents bereaved of a child. A new funeral fund that waives fees charged for a cremation or burial of a child, which we campaigned for, has also been introduced. And in 2019 we launched our new Butterfly Fund for grieving families, giving families a special no strings attached gift to help families when they need it most.

On the way to winning our campaign to more than double the Children's Hospice Grant to £25 million, we had 450 one to one conversations with politicians and policy makers, 44 MPs signed our Early Day Motion, and 63 MPs joined our parliamentary drop-in event during Children's Hospice Week

Joining the fight

Our children's hospice funding campaign made a huge difference to Acorns Children’s Hospice and the families they support like Mark and his daughter Isabella. Mark joined our campaign and fought hard to save Acorns, his local children’s hospice in Walsall.

Mark’s daughter Isabella was diagnosed with neuroblastoma, a rare childhood cancer, when she was three. Isabella and her family were supported by Acorns children’s hospices. In April 2019, Isabella passed away, aged just 11.

Our beautiful, courageous and fearless little girl always had a smile on her face, despite what she went through.
A big part of the reason for that smile was Acorns in Walsall. It became just like home because of the wonderful building and what’s inside, but more importantly, because of the incredible staff and volunteers that make Acorns what it is: a safe haven, full of joy, laughter and love.
The support Acorns has given to Isabella and to us as parents over the years has just been incredible and without them we just don’t know what we’d have done. We’ve had so many good times, and we’ve had some really tough times too, but all the way through, Acorns is the reason I’m still standing right now.

Taking the pressure off grieving families

Through our new Butterfly Fund we’ve helped families like Emma’s, whose daughter Neriah died this year. Neriah was only three years old.

Thank you so much for the Butterfly Fund gift. It is much appreciated and has helped us feel less alone. The hard financial pressures and lack of support for bereaved families of a child with long-term health needs or life limiting conditions is really challenging. Your gift has been of great help to us to do a few meaningful things to honour Neriah.

Force for Good

We work with some amazing charity partners to support the UK’s 54 children’s hospices through our national fundraising scheme. Highlights in the past year saw our longstanding partner, Center Parcs, reaching £1 million raised since the partnership began in 2016, while Hobbycraft hit £1.5 million raised since 2012. And we worked in partnership with Disney UK to create hundreds of Moments that Matter across the UK to help build emotional resilience for seriously ill children and those closest to them.

This year Hobbycraft reached £1.5 million raised for children's hospices during our partnership, £58,154 was raised by 60 runners running 1,114 miles, 100 families supported by children's hospices attended our partner Disney's festive celebration, and £400,000 was raised at our Frozen 2 fundraising ball supported by Disney and M&S Food.

Our partnership with Center Parcs is a perfect example of how our partners can make a difference nationally and locally. As well as fundraising through staff challenges and guest donations, each village and Head Office is twinned with their local children’s hospice, directly supporting families in their local communities. This year staff at Center Parcs Elveden Forest achieved their goal of funding a soft play room for East Anglia’s Children’s Hospices; making a real difference for children and families there.

“Together for Short Lives really is the perfect charity partner for Center Parcs – like us, they are dedicated to making sure families have quality time together. I know from speaking to my colleagues that this is a charity that has really touched the hearts of our employees and guests and I’m thrilled we will be supporting such a worthy cause for another year."

Center Parcs CEO, Martin Dalby

We are thrilled that this partnership has been extended to 2022.

It was another great year for our partnership with national retailer Hobbycraft. In the last year Hobbycraft:

  • Raised £325,000 – its highest yearly fundraising total to date
  • Supplied a Christmas hamper of craft supplies to every hospice in the UK
  • Held five in-store themed fundraisers to support Together for Short Lives
  • Created a Christmas film about hospices which was watched one million times

And its CEO Dominic Jordan, alongside senior staff and our own CEO Andy Fletcher, trekked 100 miles across Hadrian’s Wall to raise £30,000. In all the partnership has raised over £1.5 million for children’s hospices since the partnership began in 2012.

We were honoured to be chosen by Disney UK as charity partner for the long awaited Frozen 2 movie. This included Disney UK’s Festive Celebration in Birmingham, where hundreds of seriously ill children and their families experienced a fully immersive and sensory journey into the Frozen 2 Arendelle world. Families also enjoyed a magical day in Manchester with Disney’s Frozen 2 characters Elsa, Anna and Olaf to mark the launch of Marks and Spencer’s limited edition tote bag collaboration with Frozen 2 and Together for Short Lives. And twenty children’s hospice Moment Makers, who change the lives of these children every day, were invited to attend the film’s Premiere in London with their families, where they also met our Patron Holly Willoughby.

Thank you for making a lifetime of difference

Coronavirus has left families feeling more isolated and alone than ever. Our urgent ‘to do’ list is growing daily. More than ever, we want to thank all our supporters for your incredible generosity. The impact of the pandemic has left families feeling exhausted and alone but thanks to your support, we have been there when they needed us most.

We have one bold ambition: To reach every family caring for a seriously ill child who needs help – especially those who are isolated and hidden. We'll support more families by:

  • Growing our helpline reach
  • Giving grieving families financial support through our Butterfly Fund
  • Extending our legal advice services when things go wrong
  • Bringing families together with a “virtual cuppa”
  • Growing our online information hub
  • Developing a new online helpline chat function

You can help us achieve our goals. Please make a donation to support our work today so that we can carry on being there for every family who needs our help.

I felt totally overwhelmed that we were being offered a lifeline and “thank you” didn’t seem to go far enough. We really appreciated the support. Many, many thanks again.

Emma, Mum to Lily and Harry, who has a life-limiting condition, received a much-needed emergency food parcel from Foodbuy during the peak of the pandemic.

Find out more

You can find out more about us on our website www.togetheforshortlives.org.uk. You can also download a pdf copy of this Impact Report and a copy of our financial accounts at www.togetherforshortlives.org.uk/about-us/making-an-impact/impact-reports/. Thank you for reading.