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Holly's story
“Due to twin-twin transfusion syndrome, Holly was deprived of oxygen at birth which left her with very complex needs.”
At 36 hours old, Holly’s family were told that she was not breathing on her own and that her prognosis was very bleak: “But amazingly, when the life support machines were turned off, Holly lived. She fought every day to live.”
“We always knew Holly would not make it to adulthood. But now her twin sister is missing her other half. They were born to be a duo. They were always supposed to have each other.”
Meet our Family Hub Support Officers
Meet our new Family Hub Support Officers: Katie and Sarah.
Their important roles 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.
Before joining Together for Short Lives, Katie spent several years supporting young people with disabilities, and their families, working in both education and local services.
"I am looking forward to being able to support many more families, when and how they need it.”
Sarah has over 30 years of experience working with children and their families, having spent time working as an advocate for children and as a children’s centre co-ordinator.
“I believe every child matters and I hope to make a positive impact for as many families as I can.”
Financial support with bills
Over the past year, we have been able to provide 90 families with a £250 Cost of Living Grant. The fund helped families struggling with spiralling energy costs to pay the running costs of essential medical equipment.
We know energy costs continue to be a worry for many families. Our Cost of Living Grant programme is now closed, but if you would like support or advice about your energy, our Energy Adviser, Steve, would be happy to help. Book a free online or phone appointment, or email energy@togetherforshortlives.org.uk to find out more.
Whether you need help signing up to the Priority Services Register or advice on how to use energy more affordably, we can help.
Butterfly Fund
We are excited to announce that Together for Short Lives’ Butterfly Fund is now open across the UK. The Butterfly Fund provides a one-off payment of £300 to families following the death of a child with a life-limiting or life-threatening condition. Families must be referred by a healthcare professional.
Find out more by emailing butterfly.fund@togetherforshortlives.org.uk or make an application using our online referral form.
Morrisons Crisis Pantry
Thanks to our partnership with Morrisons, we have been able to gift a free one-off food shop to 117 families in the last twelve months.
One parent said, "the difference this made to our family is amazing. We feel so grateful to have been helped like this. The practical things are so appreciated in times of stress."
Email helpline@togetherforshortlives.org.uk to find out more.
Kidz to Adultz exhibition
We were thrilled to have recently had the opportunity to attend the Kidz to Adultz exhibition at Coventry Arena. It was a fantastic day and Sarah and Lynsey, part of our Family Hub team, loved speaking to so many parents, children and professionals from all across the Midlands.
If you missed the last event, come and say hello at the next! We will be at Kidz to Adultz South on Thursday 2 May at stand V16. Tickets are free and both families and professionals are welcome. Register your place and find out more on the Kidz to Adultz website.
Family Hub research survey
A big thank you to everyone who participated in our Family Hub research survey recently. We are currently collating all of the feedback into a report, which we will use to help us plan priorities for the year ahead. Your feedback is always important to us. We want our services to be meaningful for all families caring for a child with a life-limiting or life-threatening condition and we greatly value your thoughts and opinions.
Our Helpline is here to help you
Our Helpline is here to provide support to all families caring for a seriously ill child. We can offer a listening ear to help you talk through your experiences, and help you to find support and services in your local area, including financial grants and counselling support.
If you have questions, or would just like a listening ear, you can leave a message on our Helpline at 0808 8088 100 or email helpline@togetherforshortlives.org.uk, and we will get back to you within 48 hours.
- House of Commons Health and Care Select Committee inquiry report released on assisted dying and assisted suicide
- Martha’s Rule introduced in NHS hospitals from April 2024
- Baby loss certificates for parents in England now available
- Northern Ireland Children’s Hospice funding secured
- Scottish ministers reiterate commitment to new palliative care strategy
- Welsh children’s hospices receive funding boost from Welsh Government
- And more
Short Lives Can’t Wait campaign
In March, we launched our new Short Lives Can’t Wait campaign, highlighting the postcode lottery across the UK in access to children’s palliative and end of life care.
Our campaign and supporting research show that seriously ill children and their families aren’t getting the care they need, because of where they live.
We have produced a new report, which identifies huge differences across the UK in the way children’s palliative care is planned, funded and provided. Only a third of local areas in England are meeting the required standard for 24/7 end of life care for children at home. The postcode lottery of care is being driven by workforce shortages, inconsistencies in the way support is planned and funded by local NHS and council bodies, and an estimated £295m children’s palliative care funding gap in England.
We are calling for the UK’s governments, NHS bodies and local authorities to take immediate action for the UK’s 99,000 seriously ill children and their families. Because seriously ill children and their families can’t wait any longer
Sign the open letter
Jim, dad to Jaxson, is struggling to get the care he needs for his son, who has a congenital heart condition and rare genetic disorder. And sadly, he is not alone. Jim is one of thousands of families across the UK caring for seriously ill children who can't get the care they need, because of where they live.
Jim is supporting our campaign and writing the Prime Minister to demand change, because Short Lives Can’t Wait.
Add your name to Jim's letter to the Prime Minister and help us put an end to the postcode lottery of children’s palliative care in this country.
Morrisons raises £8 million
We are thrilled to announce that Morrisons and Together for Short Lives have raised £8 million for seriously ill children, their families and the children's hospices that support them!
From funding accessible outdoor spaces in children's hospices, to offering financial support through Cost of Living Grants and the Crisis Pantry, the partnership has been transformational for families caring for a seriously ill child. The partnership aims to raise £10 million by October 2024.
Read about eight ways the partnership has made a difference to seriously ill children's lives.
Celebrating two new corporate partnerships
We are thrilled to share that Together for Short Lives has welcomed two new corporate partners, Proxima Group and Peninsula Group.
Colleagues from both organisations will be working hard to fundraise over the next few years, taking on a variety of fundraising challenges and events. Money raised will support local children’s hospices and our Family Support Hub, enabling thousands of seriously ill children, and their families, to get vital support. We can’t wait to see how colleagues get involved!
Children’s Hospice Week coming soon
This year, Children’s Hospice Week will take place between 17 – 23 June. Throughout #Children’sHospiceWeek, we’ll share powerful family stories, showing just how important children’s hospices are for the 99,000 seriously ill children across the UK. There are lots of ways to get involved, from taking on the 99,000 Steps Challenge to sharing your story.
Short breaks and holidays resource
For many families caring for a child with complex disabilities or health needs, organising a holiday can be extremely difficult. Our free resource for families provides details of organisations who offer short breaks for seriously ill children and their families. You can download this resource from our website.
Free and confidential helpline:
0808 8088 100
Email:
helpline@togetherforshortlives.org.uk
Live chat:
www.togetherforshortlives.org.uk
