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4 May 2021

Every day people are carrying out good deeds so we decided to celebrate the great work that charities, community groups and campaigners do with a regular feature on Tuesdays, to tie-in with #CharityTuesday on social media.

This week, we caught up with charity Together for Short Lives to find out more.

Where are you based and what geographical areas do you support people in?
Our national office is in Bristol – but we work right across the UK – supporting the UK’s 99,000 children with life-limiting and life-threatening conditions & families, and the professionals and services that care for them, including the 54 children’s hospices.

How do you support people?
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 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. We stand alongside families, supporting them to make sure they get the vital care and help that they need.

We support and empower families caring for seriously ill children by listening to their needs and helping them find the right care. We provide easily digestible information about available support so families can spend less time searching for help and have more time together. We connect families with support services and other families who understand what they are going through, so they don’t feel as alone.

We support families in many ways, including our family helpline 0808 8088 100, online chat via www.togetherforshortlives.org.uk, free expert legal support service, by bringing families together via our secure Facebook group and providing lots of information and support via our online Family Support Hub.

One of the ways we support families is by fundraising for the 54 children’s hospices that families rely on, by developing corporate partnerships with companies like Hobbycraft, Center Parcs, M&S and Disney.

Together for Short Lives also supports the whole children’s palliative care sector, providing information, resources, training and advice to professionals and services caring for seriously ill children. Together with the sector we champion, improve and support children’s palliative care services and professionals. We raise awareness and understanding about childhood death and campaign for policy change, so every child and family can get the right care and support. And we raise vital funds through our collaborative partnerships to ensure children’s hospice care not only continues, but also improves.

How did the charity come to be founded?
We have a heritage spanning 40 years, prior to this children’s palliative care and specialist care for seriously ill children and families didn’t exist – our charity really helped to put the specialty on the map. We’ve not always been called Together for Short Lives – we started out as two separate charities both supporting seriously ill children, children’s palliative care professionals and children’s hospice services. ACT and Children’s Hospices UK merged together in 2011.

How many people do you have working at the charity?
Together for Short Lives has around 35 members of staff and volunteers. Most are based in Bristol, with some home working right across the UK. Like so many charities, we have spent the last year working from home, but we are really looking forward to spending time together as a team once lockdown is lifted.

How can people support you?
There are so many ways people can support the seriously ill children and families we are here for. Right now we are running an appeal for our Butterfly Fund – a special one-off cash gift for bereaved parents of a child with a life-limiting illness. When a family loses a child, they need time to grieve, not be worrying about money. Yet when a child dies of a life-limiting condition, many families suffer financial hardship on top of coping with their grief and loss.

It can feel like falling off a financial cliff edge. Benefits stop abruptly, and families need to find extra money to pay for their child’s funeral. One of the families we helped this year, is Kacper’s family. Kacper had a wish to wear a smart suit when he died. Our support with a Butterfly Fund cash gift made Kacper’s wish a reality. His Mum said: “A grant from the Butterfly Fund bought my son dignity at the end. When it was time to say goodbye, I dressed Kacper in his suit and his waistcoat. He looked so smart. I wish I could ask him if he liked it. I hope he did.”

You can make a donation online to help us support more families like Kacper’s and help us be there for the 99,000 children like him.

There are so many ways to support seriously ill children and families, from bake sales, running a marathon, organising your own event, to remembering us in your will. We’ve got lots of ideas to inspire you!

Have you faced any challenges along the way?
The number of seriously ill children has doubled over the last 20 years, so there is a growing demand for lifeline support. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week. One of the biggest challenges is reaching out to every family caring for a seriously ill child – many of these families remain hidden, and we are really struggling to reach isolated families. Our ambition is to help every family caring for a child who will die young, but we still have a huge mountain to climb to raise awareness nationally. Coming to terms with your child’s diagnosis with a life-limiting condition is heartbreaking for families. Families tell us that they can feel lost and alone, and just do not know where to turn for help.

There are so many taboos around childhood death and people often just don’t know what to say to families caring for a seriously ill child. It compounds a real sense of isolation.

And families still have to struggle to get the care they need. Having a child with a life-limiting condition brings great joy but a lack of the right support means families are suffering through their child’s short lives, and they are suffering alone. Getting the right care and support for families is still a postcode lottery and too many struggle caring for a really sick child 24/7, it can be exhausting. We can change this. We need the government to invest in the right care for families like 24/7 acute and community healthcare in hospital, children’s hospice and at home. With properly planned and funded social care. With respite breaks and psycho-social support.

A lack of support can have a devastating impact. A recent research study showed that mothers of children with life-limiting illness are much more likely to develop serious physical and mental health problems, than mothers caring for well children. These women have significantly higher incidence of depression, anxiety and serious mental illness than other mothers. They also have significantly higher incidence of cardiovascular disease and hypertension. And shockingly the risk of premature death was more than 50% higher in this population of mothers. We must change this.

Too many families are struggling to navigate a maze of medical and social services and are isolated through a lack care and support. We can’t save a child’s life. But with the public’s support we can save a family from a lifetime of suffering. Whether they are struggling to come to terms with a diagnosis, or if they just need somewhere to turn for support and information. Together for Short Lives is here to make sure that families caring for seriously ill children do not have to suffer alone, and instead can treasure every moment together, whether that’s for years, months or only hours.

Do you have any events coming up and where can people find out about these events?
Every year, Together for Short Lives runs a UK wide awareness and fundraising campaign called Children’s Hospice Week (21-27 June 2021). It’s been a year like no other for families caring for seriously ill children and families, many of whom, have been shielding since long before lockdown. Families are exhausted and many rely on their local children’s hospices for lifeline support. These families have been pushed to the limits this year. Children’s hospices are struggling too. The pandemic has had a huge impact on their fundraising – and more than ever we want Children’s Hospice Week to raise as much vital money as possible, so hospices are always there for families. We want everyone to get involved and to push themselves to the limits by raising money for children’s hospices. You can find out more here or via our social media channels.

Is there any advice you could give to other agencies?
Families caring for seriously ill children are supported by so many different agencies and professionals, but many of these agencies don’t know about Together for Short Lives or how we can support families. Help us by spreading the word – so we can be there for more and more families. You can also help by trying to break taboos, especially around serious childhood illness and childhood death. As well as supporting families, we are also there for any professional who might provide care to families like these. Our helpline and information is here for you. If we can help – please call our helpline 0808 8088 100, or chat online via www.togetherforshortlives.org.uk.

You can find out more about Together for Short Lives on their website or via Facebook, Instagram, TikTok, X (Twitter) or YouTube.