a brain tumour charity in Leeds has set up a support service specifically for young patients and their families.
Brainstrust has launched ‘Little Brainstrust’ - which is set to be the first national service dedicated to delivering effective and accessible support for children affected by brain tumour diagnosis.
Using additional funding from Children with Cancer UK, the support programme will deliver paediatric meet-ups, carer days, coaching workshops, a peer-to-peer support network and a series of educational resources.
The Little Brainstrust has been developed thanks to partnerships with a number of national charities and children’s hospitals, including Leeds Children’s Hospital.
Claire Bushell, has been appointed to lead delivery of the new service.
She said: “We’re really excited about this innovative, family-led support service that will give children affected by brain tumours and their families a voice.
“The journey these people face can be very confusing and very lonely. We’re looking forward to challenging the disjointed landscape to bring relief, hope and useful support that will provide a new standard for families living with brain cancer.”
Helen Bulbeck, co-founder and director of services at Brainstrust, added: “Emotionally, we are already committed to creating the best support service possible for children and parents battling a brain tumour diagnosis.
“There is a social injustice at play here; it is simply wrong there is no dedicated resource with national reach that exists for children with a brain tumour. Carers should not feel as lost as we did.”