Together For Short Lives
About Together For Short Lives
Together for Short Lives is the UK charity for children and young people who are expected to have short lives.
Together For Short Lives Description
49, 000 children and young people are living in the UK with health conditions that are life-shortening or life-threatening—and the number is rising. That’s one in every 270 children—the equivalent of one in every school.
Hearing the news that your child has a life-shortening condition and is likely to die young is devastating. It’s an incredibly distressing and confusing time. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become challenging. Although there are many excellent services helping them, these families still have to fight to get the care and support they need.
Together for Short Lives is here for every one of these children and their families, being a companion to parents on their journey so they know where to go for support and have the information to help them make the right choices about their child’s care. We are here to help children and their families to access specialist children’s palliative care services, day and night, seven days a week—when and where they need it.
Together for Short Lives also supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK. By working together with professionals and organisations we provide a strong and unified voice, and help services deliver the best quality care and support tailored to each family’s needs.
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Our family Facebook group is a safe place for families to share and connect with each other ✨
If you care for a child with a life-limiting condition, join our lovely, supportive community through our website.
https://www.togetherforshortlives.org.uk/ …/families-togeth…/
A new report from Carers UK has found that more than 600 people a day leave their jobs because of the demands of caring for a relative. https://www.bbc.co.uk/news/education-4711 6657
This echoes our Hidden Lives report which shines a light on the social exclusion faced by families caring for a seriously-ill child. https://www.togetherforshortlives.org.uk/ hidden-lives-84-o…/
If you care for a child with a life-limiting or life-threatening condition and have any questions or are finding it hard to cope, call our Helpline on 0808 8088 100
🗣️ MPs debated how the government can better support children with life-limiting conditions and their families in Parliament yesterday. MPs from across the House of Commons asked the Care Minister, Caroline Dinenage, if she would take action to boost children’s palliative care funding in England, increase the number of nurses and senior doctors able to care for seriously ill children, and better support families who are bereaved of a child. If you were one of the many who wrote to your MP to ask them to take part – thank you! You can read our reaction and watch the minister’s full response here 👉 https://www.togetherforshortlives.org.uk/ minister-commits-…/
"I think cancer-speak can be quite negatively loaded - the brave, fighter, warrior and survivor standard descriptors put an awful lot of pressure on the newly diagnosed."
The way we talk about illness & death matters. According to a survey by Macmillan Cancer Support, people who have (or have had) cancer felt that describing it as a “battle” or “war” can be unhelpful.
We'd like to know how you talk about long-term illness and loss with your loved ones. Are words like "battle" helpful, or do you prefer a factual approach?
Last chance to take action ✊ Use our template message and ask your MP to join tomorrow’s debate on support for children with life-limiting conditions and their families. It’s a crucial opportunity to speak up for families and palliative care services 🗣 #EOLCommitment
Did you watch 'We Need to Talk about Death' on BBC Two last night? Our friend Junior opened up about the importance of being able to make his own decisions about the care he receives. Watch now (⏱️36:00 mins in) https://bbc.in/2CEHO8x #BBCHorizon
Charlotte Huzzey also spoke on Sadie Nine BBC Essex this morning, on the importance of total honesty from care professionals around end of life care. She also highlighted the amazing work that Havens Hospices do for her daughter Ruby (⏱️20:00 mins in) https://www.bbc.co.uk/sounds/play/p06whdq c
We are thrilled to share that our good friend Peter Andre has become Patron for Together for Short Lives & Chestnut Tree House. Peter is a real strength to our work with children and families. Last autumn Peter joined our Nutcracker Ball and heard mum Carly share her family’s heartbreak of hearing the news that her daughter Effie had an incurable condition. Peter was struck by her sense of isolation and her struggle to get the right support.
“No family should face this journ...ey alone, no family should feel isolated or have to fight to get the care they need. Families like Carly’s haven’t got time to waste – and need to know that help is at hand now. Thank goodness that Together for Short Lives was there for Carly. That’s why I’m right behind their national work of reaching out to families and campaigning to make sure every family get the care they need.”
“I’m really blown away by the work of @ChestnutSussex and Together for Short Lives. What they do is incredible, and I am honoured to become a Patron of both charities.” says Peter Andre https://www.togetherforshortlives.org.uk/ peter-andre-is-ou…/
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Did you know that we provide free legal support for families looking after a child with a life-limiting condition? ⚖️
Our service 'Voices for Families' will match you up with a legally trained advocate who can help you access the support you need, from housing adaptations to care packages.
If you'd like to access the service, give our friendly helpline team a call on 0808 8088 100 ☎️
📣 Children with life-limiting conditions and their families rely on a range of palliative care services at hospital, in children’s hospices in the community. Sadly, services are patchy and whether or not they can access the care they need depends on where they live. Please get in touch with your MP to ask them to take part in the Westminster Hall debate on support for children with life-limiting conditions on Tuesday 29 January at 9:30am. ✍️ Write to your MP now: www.togetherforshortlives.org.uk/westmins terdebate2019
Suspicion of lobbying and campaigning is impacting on the work of charities to speak up - but at Together for Short Lives we’re proud of the success our lobbying and advocacy, and we must be bold in continuing to fight for the families and young-people who need us the most, says our CEO Andy Fletcher.
Last Autumn we launched a shiny new publication - The Guide to Children’s Palliative Care – and it’s been written with the needs of the children and families we support at the very heart of it.
The Guide will be used across the UK and further afield to help those who care for seriously ill children understand the unique needs of our families more.
Lizzie Chambers, who co-wrote the Guide said: “It’s been written with a passion to make sure that every child and family get the v...ery best care and support.”
Read Lizzie’s blog about why it was written here: https://bit.ly/2ObQ4EF
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Life changes when your child is diagnosed with cancer.
That's why we've created an up-to-date list of charities that can help. From financial aid to short breaks, these charities offer a safety net of support during the hardest of times.
Children with life-limiting conditions and their families often struggle to be heard.
That's why we’re delighted that the new long-term plan for the NHS in England, published by the Prime Minister today, says that children’s palliative care is an important priority for the NHS.
You can find out what the new plan means for seriously ill children, their families and the services that care for them here.
"It was so amazing knowing the money I raised running the Marathon will help families that are caring for a seriously ill child. As a mum that means so much to me."
Last year Lara completed the challenge of a lifetime by completing the London Marathon to raise funds for our work - work that supports parents like Carly Hadman, who lost her daughter Effie in 2017. "Together for Short Lives was there for us when we felt lost,” Carly says.
We have loads of events coming up in 2...019 – if you're inspired by Lara or Carly then do something amazing this year and raise vital funds for our work supporting seriously ill children.
"We are so grateful to everyone who takes up a challenge and raises money for Together for Short Lives," says Carly. "Having their support is priceless."
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We’re funding 8 new awesome projects to support seriously ill young people, from helping GPs to understand young people’s needs, to supporting young people to open up about relationships and intimacy. Learn more about the projects here: https://www.togetherforshortlives.org.uk/ transitionfund #TFSL18
One of our biggest highlights from this year was celebrating Children's Hospice Week with you all.
We asked you to share your Life's Short moments: the ones that make your heart sing. Over 37 million people got to see the campaign, and we loved seeing what makes you happy! #TFSL18
Lara ran the Virgin Money London Marathon for us in April. Our amazing supporters and corporate partners have taken on several challenge events this year raising £128,000.
Do you have what it takes to help us raise even more in 2019? Join Lara and help us raise vital funds for seriously ill children across the UK. Our calendar events has a challenge for everyone: https://spark.adobe.com/page/cLXkMBk66dsX 3/
We'd like to give a big shout out to our Patrons Simon Cowell & Holly Willoughby, Ambassador Richard Jones & celebrity friends Melanie Sykes & Nigel Clarke - TV Presenter for helping raise vital funds & awareness for children’s palliative care. You guys are awesome, thank you for everything you do!
#TFSL18
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