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Demelza’s Impact Report – April 2020 to March 2021

Our latest impact report talks about 2020/2021 being a year of challenge, inspiration and achievement.

2020/21 was a year like no other for the 575 children and young people with serious or terminal conditions, and their families, using Demelza’s services. At a time of great uncertainty and fear, we had to ensure the needs of these families were at the very heart of every decision we made. This wasn’t always easy, especially at the beginning of the pandemic when we had to find new ways of supporting clinically vulnerable children without putting them at risk. But we did it, we did it better than any of us could have predicted or imagined. We couldn’t have gotten through this year without our amazing team or our incredible supporters, who stood by us during the most challenging of times, and for that, we cannot thank you enough.

During the pandemic, Demelza revolutionised services to continue offering a virtual lifeline and telephone communication to the vulnerable who were severely impacted, spending many months isolated and shielding. This programme of activities has been adapted and developed over time and continues each week. The Practical Support Volunteers were utilised to deliver therapy bags, Easter eggs, and Christmas presents, they also continued to support travel to hospital and other essential appointments.

Lucy and Sam during a music therapy virtual group

Adapting our services during 2020/2021

“In the first virtual music group of May 2020, children excitedly recognised each other in a zoom session and spent several minutes laughing and pulling faces on screen, having not seen each other for several weeks because of lockdown, allowing connections to be made that had been absent for many. It’s a wonderful opportunity for families who access Demelza’s services to enjoy something together, and see that they are not alone.

“The groups have explored the Wild West, the Jungle, travelled to space and all around the world. We have celebrated Christmas, Easter, Bonfire Night and Diwali together. We always have at least one song that we sign using Makaton to support children and their families to learn to communicate using Makaton in an accessible and fun way.”

Victoria Swan, Demelza Senior Music Therapist

Throughout the pandemic, Demelza implemented rigorous Infection Prevention and Control policies, procedures and training, and secured the essential equipment that enabled safe clinical care to continue for all emergency admissions, including end of life care, social care placements and symptom management.

Local NHS Trusts invited Demelza, as part of their vaccination programme, to receive early access to the vaccine to play our part in the pandemic recovery.

Demelza rolled out rigorous testing regimes for all staff and volunteers who could not carry out work from home as early as possible to ensure we could safely restart our offer of respite care to children and families.

Demelza’s clinical services COVID-19 infection outbreak record is zero. We will continue to navigate our way with the same high levels of clinical safety at all times whilst offering the high standards of quality and care our children, young people and families deserve.

Demelza’s staff and volunteers have shown exemplar commitment, and “Passion Performance and Pride” one of Demelza’s organisational values, regardless of the role they hold or the part they have played in our journey this year. Demelza remains committed to providing development, support and training to all staff and volunteers to ensure we have the skills, expertise and knowledge to stay at the cutting edge of children’s palliative care.

Forget-me-not flowers.

Adapting our bereavement support

A wrap-around frame work in the form of virtual bereavement groups, cafes, helplines, online forums and a befriending scheme was stablished and now empowers Demelza bereaved families to choose when and how to engage at a time that is right for them.

“With a team of bereavement volunteers in place to support the new changes, we are ready to embrace a positive future; one that continues to grow and reach more families. Thankfully the changes made to accommodate COVID-19 have never been perceived as temporary. The creation of a virtual presence is now firmly established, and our team will continue to offer this alongside face-to-face sessions – when safe to do.”

Jo Burton, Therapeutic and bereavement lead

Our focus is very much on the future and how we continue to build on the services provided to babies, children, young people and their families. As we plan a new five year strategy that is strong, resilient and ambitious in an uncertain world, we look to how the families who have used Demelza services for our inspiration and guidance. Families will form an essential strand of our consultation and planning that will take Demelza from strength to strength.

Read our full impact report today, by downloading our Impact Report pdf.