Ben is a Family Service Coordinator working for Together for Short Lives as part of the Kentown Children’s Palliative Care Programme. A transformative project between Together for Short Lives, The Kentown Wizard Foundation and Rainbow Trust Children’s Charity. Created to help families of seriously ill children access the help and support they need in their local community.
We’re over a year into the Programme now and that means over a year into the job for me. So, what a great time for me to reflect on how it’s going and to share with you some of the highlights.
What is the Kentown Children’s Palliative Care Programme?
Across the UK, the number of children with life-limiting conditions is rising and too many families are not getting the vital care and support they need. And navigating this care is often one of their biggest challenges.
So, Together for Short Lives, The Kentown Wizard Foundation, and Rainbow Trust Children’s Charity have joined together to address this problem and create a groundbreaking new Programme. The first of its kind in the country.
It is a unique project which has a community focused model to bring together nursing care, social care, and information and awareness about the support available. By providing nursing, practical and emotional support to families and by helping them access services in their local communities, the project is reaching families more easily and quickly than ever before.
How will the Programme and my role help?
Navigating all the different services available, balancing appointments, and juggling everyday life is a big struggle for families with seriously ill children. Often, they don’t even know what support is out there for them. This is where the Programme and my role will help.
As a Family Service Coordinator, I’m there to reach out into my community, and provide information to families so they know what help is available. I save them the time and the stress of researching it. Housing needs, financial support, getting access to their local hospice, finding help for a sibling. I’m there to coordinate access so they can focus their time on making the most of every moment with their child.
A typical day for me
Morning: After dropping my own little one off at nursery I check through my emails and see a message from a family I’ve nominated for a Center Parcs break. Mum had been desperate to provide them with something to look forward to this year. It reads: “Can’t thank you enough for sorting this. I’m so grateful and know my children will have the best time together making memories. Thank you for giving us something to look forward to.”
Late morning: Next I meet with Kentown Support Nurses and Rainbow Trust Family Support Workers to ensure we can discuss the needs of every family within the Kentown programme.
Afternoon: I ring a mum who needs support over the summer holidays. I’ve been researching short breaks for her family and I tell her about a canal barge break and offer to send her some National Trust day passes. I also catch up with the dad of a child in hospital who is trying to adapt his home.
Late afternoon: I meet with a colleague to talk about the Together Short Lives Butterfly Fund and we go through some new grant applications to help support bereaved local families. Finally, I check my ‘to do’ list and send out a final email, ensuring a memory making event is confirmed for later in the month.
Reflecting on year one
There have been so many highlights over the past year. Talking to families and hearing about the difference the Programme has made and how they feel supported by us as a team makes me feel like we’ve created something special.
There’s no other job I’ve had where the team is so dedicated to making a positive difference to the lives of those we are working to support. We are all here for these families and I can really feel that. I truly believe the programme has made a difference to every family it supports.
What’s next for the Programme
In year one we supported 128 families, and we will continue to help many more for the remainder of this amazing three-year project. To gain the best insight, a team at Edge Hill University has been appointed to lead the evaluation to assess the benefits and longer-term impact for children and families. With this information we can look to the future and unite services providing better access for children and families.
Keep updated
We will keep you updated about the progress of the Kentown Children’s Palliative Care Programme with blogs and updates in the Changing Lives e-news. If you would like further information now, please email us at info@togetherforshortlives.org.uk or visit kentownsupport.org.uk
