The latest news from Together for Short Lives for families and carers.
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Osian's story
“Osian was full of joy and magic, and that is how we will always remember him,” says Osian’s mum George, remembering the boy who was born at 23 weeks and spent almost his whole life in hospital.
Baby Osian arrived into the world in November 2021 weighing just 507 grams. He was born with chronic lung disease and then later developed a narrow airway due to many months being ventilated.
“We were told immediately that the chances of him surviving were very slim indeed. Every day was going to be a fight for him” says George.
“Despite his illness he was living a truly full life. I made sure of it. That’s what I want people to remember about him. He wasn’t his illness or his condition. He suffered great hardship, but he was not sad.”
Share your story
We are looking to speak to families who would like to share their story with us and help support other families caring for a seriously ill child.
There are lots of opportunities to get involved, from writing a blog piece for National Siblings Day or a poem for Mother’s Day to speaking to one of the Together for Short Lives' team and sharing your family's story here. Every story shared helps support other families caring for a child with a life-limiting or life-threatening condition.
If you would like to share your story or find out more, get in contact by emailing Marcella here.
Our 2023 impact
As the year draws to a close, we have been looking back at what we have achieved in 2023 to support children with life-limiting and life-threatening illnesses and their families. Here are some of the things we have achieved:
£6 million raised for children’s palliative care
46,961 visits to our online Family Support Hub
674 families supported with £250 grant for the Cost of Living Crisis
37% rise in helpline users
32% growth in family Facebook group members
5 sibling events held
Together for Short Lives x Hobbycraft memory book workshops
We are hosting three memory book making workshops early next year for parents and carers of seriously ill children. You will be sent a special pack of free items to help you create a memory book, which have been kindly donated by our long-term partner, Hobbycraft.
Online – January and February (dates and times tbc)
In-person – 23rd February, Jolly Josh, Rochdale
Keep an eye out on our social channels for more information about our online events in January and February. To find out more information or to register your interest for the Manchester event, email helpline@togetherforshortlives.org.uk.
Get energy support
Our exciting new partnership with SGN (gas network company) has launched.
You can also book an appointment to speak to our new Energy Adviser, Steve, on our website.
Whether you need help signing up to the Priority Services Register or advice on how to use energy more affordably, we can help.
Read more about the project and book an appointment here.
Meet our Energy Support Adviser
Thanks to our partnership with SGN, we’re excited to introduce our new Energy Support Adviser, Steve.
“For the last three years I have been supporting families that are struggling with managing their energy costs with simple, expert energy advice. I am passionate about supporting families who have a child with complex needs, and I understand how the energy price rise affects families that rely on medical equipment to support them at home.
“I can offer expert advice on all energy related issues, from problems with bills, cutting energy and water usage, damp and condensation, priority service register and much more.”
Steve is supporting families worried about their energy bills via our Family Support Hub. If you would like to book an appointment for an informal chat with Steve, head to our website.
Heart in Their Hand
Heart in Their Hand offers bereaved families a gift to leave with their child when they die and a matching keepsake to be taken home with the family, creating a tangible connection that lasts forever.
Families can sponsor a heart in memory of their child or a loved one, to support other families in their bereavement. You can donate the sponsored heart to a children’s hospice or to a local hospital.
Survey participants needed
We need your help! To ensure we can reach and support as many families as possible, we are conducting research into the communication channels and support services we provide. We are looking for participants to complete our survey.
The survey should take around 10 – 15 minutes to complete and your answers will be treated in the strictest confidence. Anyone is welcome to take part.
SOFT UK podcast
Our Director of Service Development and Improvement, Helena Dunbar, recently sat down for SOFT UK's podcast. She spoke about how we support families and involve them in our projects.
Meet our Family Services Manager
We’re excited to welcome Lynsey, our new Family Services Manager.
“I have worked with children and families for 25 years now and I have a passion for providing meaningful support to families. I hope to bring that passion into this role.”
Lynsey oversees the management and development of services delivered through our Family Support Hub. She is also one of the Deputy Safeguarding Leads at Together for Short Lives.
Her important role will help us support more families through our Helpline, referrals to financial and legal support, peer support for families and signposting to information and external sources of support.
- NHS England will be renewing the Children’s Hospice’s Grant
- Martha’s rule is being explored
- New Nuffield report recommends help to resolve care disagreements
- Review of disabled children’s social care law in England
- Dorset, Lincolnshire and Wolverhampton councils deliver government children's social care programme
- Scottish ministers reiterate commitment to new palliative care strategy
- And much more
Our Christmas appeal has launched!
When the future is uncertain, every moment is a gift. Our Christmas appeal shines a light on these moments that many take for granted, but which mean everything to families of seriously ill children.
The appeal is supported by our Patrons, Simon Cowell, Mason Mount and Peter Andre, and Ambassador Alesha Dixon, as well as other celebrity faces.
Morrisons’ Rudi range
This Christmas, our corporate partner Morrisons have created a festive Rudi Reindeer range with many items donating to Together for Short Lives. From reindeer-shaped crumpets and butter, a Rudi celebration cake, biscuits and chocolates, there are lots of delicious treats for your festive table. The funds raised will help local children’s hospices continue to provide vital care and support – so add the Rudi range to your weekly shop. Online and in store now!
A beautiful new butterfly suncatcher is raising money for your local hospice
A special new product is taking flight in Hobbycraft stores across the country – a beautiful, customisable suncatcher in the shape of the butterfly on our logo. For every suncatcher sold, 50p will be donated to Together for Short Lives so we can continue to support families like yours across the country and the incredible hospices we’re proud to work alongside.
Butterflies are particularly special to us because they remind us that while some lives may be short, they can be beautiful, unique, and full of precious moments. We are incredibly grateful to our friends at Hobbycraft for their continued support.
Caring for your child at end of life resource
The information in our resource for families aims to provide practical information to support families at the most unbearable of times. Families might want to work through the guide with their care team one step at a time, when they are ready. You can download this resource here.
