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 the best possible standard of service and treatment, including 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 evidenced that the concentration of expertise in specialised centres and knowledge sharing between centres can contribute to better outcomes, improved patient satisfaction and access to research for rare diseases. In line with this vision, TJBCM aims to recognise and congratulate centres that offer a high standard of care by awarding them the Tessa Jowell Centre of Excellence designation. Equally, we want to support centres who may not be quite ready for designation to develop their services, by providing essential feedback on how to make enhancements across their service and providing a knowledge-sharing platform.
For UK neuro-centres, designation as a Tessa Jowell Centre of Excellence will serve as a national recognition of their staff going above and beyond. For patients, getting treatment in a designated centre will mean that they can be confident that they receive the highest standard of care under the NHS. Our aim is to enable and encourage as many centres as possible to achieve ‘Centre of Excellence’ designation so that we collectively raise the bar and set an example across the cancer community on how we can lead in the treatment of rare cancers.
Through participation in the assessment process, centres will not only gain valuable feedback from the TJ centre committee but they will also play an important role in amplifying our voice as a brain tumour community by providing thematic feedback to the NHS Commissioning team and DHSC; for example, if there are certain areas that suffer from structural underfunding across all Trusts the committee will highlight and discuss these. Therefore, participating in the assessment process is extremely helpful, as it will put us in a strong position to give detailed feedback and advocate for appropriate resourcing.