NHS England launched a 60-day consultation on 5 June 2019, to seek views on proposed changes to children's cancer services. The aim of the service specifications is to improve the outcomes and experience of children and young people with cancer in England. The consultation will run until Sunday 4 August 2019.
We encourage professionals and families of children with neuroblastoma or any other cancer to respond to the consultation to make your thoughts known.
Neuroblastoma UK’s response
At Neuroblastoma UK, we are committed to funding leading research to deliver new, effective and kinder treatments and finding a cure for children with neuroblastoma. This year, we are supporting nine new research studies into neuroblastoma, with a total funding of nearly £1.2 million.
We are encouraged to see that NHS England have recently published their 90-day consultation to seek views on proposed changes to children's cancer services, as part of their NHS Long Term Plan. The NHS Long Term Plan includes a number of important commitments for improving the outcomes and experience of children, teenagers and young adults with cancer, including supporting children and young people to take part in clinical trials.
We particularly welcome elements of the consultation that focus on research and clinical trials.
We welcome the proposals to make it easier and quicker to conduct future research studies, by offering all children, teenagers and young adults with cancer an opportunity to have their data and tissue samples to be collected. Introducing more efficient methods to support future research studies may lead to the faster development of new treatments. The treatments could then be more rapidly translated into a clinical trial for children with neuroblastoma.
We support the proposals to increase participation in clinical trials. If more children participate in clinical trials, statistically valid research results and conclusions can be reached more quickly, for the benefit of all children.
We welcome proposals to ensure effective access arrangements for specialist services including Proton Beam Therapy and CAR-T cell therapy, giving children with neuroblastoma the best treatment, at the right time and in the right place.
However, we need to ensure that a high level of paediatric cancer training and support is provided for newly proposed Networks, and that there is knowledge and learning sharing across the Networks.
We commend the hard work that has been carried out by the Children and Young People’s Cancer Clinical Reference Group (CRG), its members and other stakeholders in the service specification development. We look forward to updates on these proposed changes and any future consultations, to ensure that patients receive the safest, high quality and personalised care and treatment options.
About the Children’s Cancer Services consultation
NHS England has launched a 60-day consultation to seek views on proposed changes to children's cancer services. The aim of the service specifications is to improve the outcomes and experience of children and young people with cancer.
This consultation guide sets out:
How care is currently provided.
The proposed changes and reasons for these.
How the proposed changes will be implemented.
The consultation will run from Wednesday 5 June until Sunday 4 August 2019.
Give your feedback
To read the consultation guide alongside the other supporting documents published as part of the consultation, please visit the NHS England Consultation website. You can then complete an online survey or submit comments by email.
A series of webinars for young people, their families and a range of professionals have also been organised throughout July.