Programme Lead: Sarah Lindsell
Purpose: To harness the power of patients, as experts by experience, to direct and drive improvements in survival and quality of life for all those affected by brain tumours.
Aims: For every patient to receive:
A quick diagnosis: by accelerating the time it takes to get a diagnosis
Excellent treatment and care: by driving forward best practice so it is available to all
To live well: by collaborating to improve patient experience and quality of life
1). A quick diagnosis
Heather Dearie from Ayr was diagnosed with a brain tumour more than a year after she first consulted a GP about her symptoms.
“Earlier diagnosis would have made a dramatic difference to me. By the time my tumour was removed, the surgery I needed was very damaging – I still have muscle weakness in my face and no peripheral vision. A brain tumour should never be the last thing doctors consider.”
Objective: Drive earlier adult diagnosis
The group aims to launch an adult early diagnosis campaign to raise awareness of brain tumour symptoms. Earlier diagnosis can mean more treatment options, a better recovery and improved quality of life. The urgent nature of this issue is highlighted by the fact that:
- 63% of high grade brain tumours are diagnosed as an emergency
- 55% of those diagnosed have visited their GP three times or more, and 31% five times or more before getting a diagnosis
2). Excellent treatment and care
Richard was diagnosed with a glioblastoma in March 2012. He was willing to try any treatment that his oncology team or researchers could offer.
He used to say: ‘I’ll take whatever they can give me,’” recalls his sister, Mel, but “Study after study after study was ‘not suitable’ for Richard.”
Richard, who died in January 2013, did eventually find one project in which he could participate. But, having indicated his willingness to participate, Richard was never contacted and so missed out. “He just felt so frustrated. Even if it was too late to save Richard’s life, it might have helped them understand a bit more about what he had and how it could be treated in someone else.”
Objective: Define and implement a model of excellence
Few patients in the UK are benefitting from full access to best practice in treatment and care. The group aims to work with the new Centres of Excellence Programme to define and encourage the adoption a model of excellence, starting with the BRAIN MATRIX sites and including the principles of the Integrated Care Model which has proven to improve outcomes and reduce costs through implementing a patient-centric approach.
Objective: Use patient advocates to support data sharing and clinical trials
The group aims to use experts by experience – patients – to accelerate research and improve outcomes through championing data sharing and involvement in clinical trials. 97% of people affected by brain tumours would share their medical data even if this only helps others. Sadly, only 3% of brain tumour patients take part in clinical trials, compared to an average of 7% for all cancers. Patient advocates will drive change through championing involvement in research and improvements in treatment and care.
3). To live well
Kate, 20, lives with her mum and dad in Leeds and works as a play worker and primary school assistant. She started having seizures when she was 13 and was diagnosed with a low grade astrocytoma in her GCSE year.
She takes medication to manage her seizures and is frustrated by the fact that “my tumour is being monitored but not treated. I feel that other people don’t understand what life is like for me.”
Objective: Compensate for the unique impact of brain tumours on quality of life
The group aims to ensure that the unique impact of brain tumours is taken into account when making treatment decisions, measuring quality of life and rehabilitation planning. Brain tumours have a different impact to other cancers. The key differences, as evidenced by research, are fatigue, cognitive function and mood. These factors have a disproportionally large impact on quality of life, affecting work and relationships. 62% of children who survive a brain tumour will be left with a life-altering, long-term disability. With early and appropriate intervention, the impact of brain tumours and related surgery can be mitigated, quality of life improved and the lifelong burden on the NHS reduced.
Objective: To develop ‘end of life’ support models for brain tumour patients
We will agree and implement a clear plan for end of life information and support for brain tumour patients. 60% of people diagnosed with a high grade brain tumour will die within one year and 81% die within five years. 14 people in the UK die from a brain tumour every day – about 5,200 every year. 55% of people who have a terminal brain tumour diagnosis haven’t been given a choice of end of life options. Two thirds of UK nurses said that they didn’t have time to provide high quality care for patients who are dying, with 64% of patients wanting to die at home and yet only 30% of them do. This position must change.
Update on Progress
Early Diagnosis: Building on the work of the commissioned research into early diagnosis, the team has now engaged with external experts and the patient programme to develop the public facing campaign to encourage early diagnosis.
Integrated Multidisciplinary Care Model (IMCM): The team is contributing to the NHS Neurology Review to make sure it includes best practice from the IMCM and other areas.
Patient Experience: The team is now represented on the pilot for developing the Quality of Life measure for the cancer dashboard and feedback has been given.