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CHAS, Keeping the Joy Alive

Rami Okasha, Director of Transformation and Innovation tells us about the upcoming CHAS Parliamentary Reception 2019: 'Keeping The Joy Alive'.

Tomorrow marks the date of our Keeping The Joy Alive Parliamentary Reception where we are coming together to celebrate the impact we've made to the wider palliative care sector and of course, to individuals across the country. We can assure you, the excitement is building!

Currently, we support 465 babies, children and young people with life-shortening conditions - an increase of 25% over the past five years. We know that for every child we care for, we also support another five family members including siblings, parents, and grandparents. We're incredibly proud that CHAS services reach every part of Scotland and we do that by working collaboratively with the Scottish Government, health boards and local authorities. Planning for children across different organisations helps result in the best possible care for individuals and families who need palliative or end of life care. Our two hospices, our CHAS at Home services and our hospital teams work together to keep the joy alive for each and every child who experiences our care.

As part of our plan to reach every family in Scotland who needs our care, we've focused on innovating our services. Children and young people with life-shortening conditions can now benefit from a new partnership between the Royal Hospital for Children in Glasgow and CHAS. The new Paediatric Supportive and Palliative Care Team is the first of its kind in Scotland and the hospital has welcomed a new consultant in paediatric palliative medicine and two clinical nurse specialists, all fully funded by CHAS. The team work alongside other NHS and CHAS staff based in and around the hospital. We've also recently introduced Project ECHO. This uses video conferencing technology and a case study methodology to bring clinicians together across the country to discuss best practice and help ensure experts in particular types of care can spread their knowledge across Scotland and beyond.

The (ChiSP) 2 study was published this year and highlighted that nearly 16,000 babies, children and young people aged 0-21 have life-shortening conditions across Scotland. Whilst many of these children are currently stable and living well at home, many families face the daily reality that their child will die young and might deteriorate at any moment. That is where CHAS comes in. We are determined to grow our services so we can support even more families through the hardest of times. The need for our full family support service couldn't be more vital. For over 25 years, we've offered palliative, end of life care, family respite and support for babies, children and young people with life-shortening conditions across the country but we want to do more.

We aim to continue to grow our service provision across the whole of Scotland to meet increased need with new clinical and support staff, and volunteers, working in expanded and new services. Through our dedicated supporters, matched with support from local authorities, the NHS and the Scottish Government, we're going to be able to reach more children than ever before. Scotland has some of the most detailed statistical data about children with life-shortening conditions in the world and CHAS continues to commission and use research to make sure service design is research-led and best practice is shared.

We're incredibly proud of the work we've done so far but our mission is ambitious. We want to make sure we reach each and every child who requires our care, helping families make memories to last a lifetime. With your help, we know we can achieve it. We'll be using our Keeping The Joy Alive celebration as an opportunity to share our learnings with government, MSPs and wider stakeholders. It'll also provide an opportunity to champion the hard work and dedication of the staff and volunteers who work and contribute to keep the joy alive on a daily basis. These are the people that can make our vision a reality.

Make sure you keep your eyes on our social media accounts throughout the evening - we'll be posting regular updates throughout the reception so you can follow the journey at #KeepTheJoyAlive. If you're inspired by stories you hear from staff and volunteers or the work that we are doing, please share this with your networks to help raise awareness of the work CHAS does and help keep the joy alive for children and families.

If you want to talk to someone about your own situation or find out more about our services, please get in touch: