Programme Lead: Professor Kate Bushby
Define specifications for Tessa Jowell Centre of Excellence status to recognise Neuro-Oncology centres that provide a comprehensive level of service and research activities for brain tumour patients and their carers and deliver a programme to identify and monitor qualified centres.
Disenfranchisement of brain tumour patients in the UK is common. Typically patients feel left out without access to dedicated “brain tumour centres”. We believe it is important that patients have access to a minimum level of service and treatment options, and should have the right to enrol into a trial if they wish. No patient should be left behind due to poor access to care and research. It is well established across the rare disease spectrum that recognising the benefits of concentration of expertise in specialised centres can contribute to better outcomes, improved patient satisfaction and access to research.
The overall vision is to recognise a level of expertise in specific centres via their designation as Tessa Jowell Centres. This would represent a huge step forward in acknowledging the specificity and complexity of brain tumours and recognise in a sustainable and high profile way the role that Tessa Jowell, on behalf of all patients with brain tumours and their families, played in changing the environment for brain tumour care and research.
- Establish a working group with multidisciplinary representation to deliver the programme
- Define the criteria that the centres should meet in order to be eligible for designation as a “Tessa Jowell Centre”
- Determine the process for collection of evidence for adherence to these specifications on a cyclical basis
- Work with centres to identify and resolve barriers to meeting the criteria