In Brain News, Charity News, Research News, Uncategorized

Tessa Jowell Brain Cancer Mission Update

It’s now nearly a year since the beginning of our involvement with the TJBCM and it has been a great opportunity to represent the people we support every day. We know that there is still a lot of work to do with the patient and caregiver experience; your experience. This experience is in our DNA so it has been a welcome opportunity to share with the Mission where the gaps are and what is needed to fill them. Our key focus is on being people first and patients second. Looking forwards, we hope to work with the TJBCM on:

  • Quality of life multidisciplinary team meetings
  • End of life care support
  • Shared decision making – so that everyone, clinicians included, feels supported in difficult decisions that have to be made.

There is much to be proud of in what has been achieved by the Mission so far.

  • The Brain Matrix: An innovative approach to clinical design. It is adaptive and agile in the way it will be targeting treatments to patients. brainstrust is representing the patient and public voice in the Brain Matrix, crucial to ensuring that the trial is designed with the patient at the centre. We know that patients and carers have unique experience and expertise that they can bring to trial design; this enables us to be part of the solution to problems faced by researchers when designing a trial.
  • Regeneration of the neuro-oncology workforce. To improve outcomes, it is essential that we grow the brain tumour research community in the UK, train outstanding healthcare professionals and offer better care for patients in the UK. So we’re working with the workforce team, developing a training fellowship programme in neuro-oncology for trainees in medical and clinical oncology, radiology, neuropathology and neurology

It is our interactions with you, the people that we support on a daily basis, that give us the insight to be the patient voice in these settings. First and foremost we will always be here to help you live the life you want to with a brain tumour.

Email hello@brainstrust.org.uk or give us a call on 01983 292 405 to speak to somebody that understands.